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Learning Disabilities Care Pathway Overview

  • Check if the person has a Learning Disability- Tip - use the Identification Check List and Register Inclusion Tool
  • Check the person is on the QOF register - if not add them
  • Check the person is eligible to be offered an Annual Health Check (AHC)
  • Check carers status/support and record on the system
  • Check capacity in accordance with Mental Capacity Act & RCGP Mental Capacity toolkit
  • Check consent
  • Consider reasonable adjustments when planning for the Annual Health Check (AHC) (e.g. first/last appointments, distractions, how you will communicate)
  • Before conducting the Annual Health Check (AHC) look at their records (Summary of past medical history, issues raised before, current medication, last few consultations, recent investigations)
  • When conducting the Annual Health Check (AHC) consider;
    • Are you familiar with the electronic template in your clinical system?
    • Who will do which parts of the Annual Health Check (AHC) (Nurse can do first 2 pages, GP should do last 2 pages)
    • What the patient/their carer are concerned or worried about
    • health/social/risk needs
    • referral to mainstream services
    • referral to specialist service

  • Speak clearly and slowly.
  • Use short sentences and simple language.
  • Carry out the health check in a place where there are limited distractions. For instance Silence or put on ‘do not disturb’ on your phones.
  • Give the person time to process your question and to respond.
  • If the person does not appear to understand the question ask it again in a different way or use different words.
  • Start with an open ended questions- to avoid those that can be answered with a simple yes or no.
  • Try not to put words in people’s mouths.
  • Consider using pictures or draw simple picture to help the person explain their symptoms.
  • Questions involving time or quantity can be challenging. Try to link this with something that happens in a person’s life such as a weekly activity.
  • Don’t focus just on their spoken language, also observe their body language.

Please use the Identification Check List and Register Inclusion Tool

A person is identified as having a Learning Disability and being eligible to receive a service if all three of the following are present:

  1. Significant impairment of intellectual functioning; and
  2. Significant impairment of adaptive behaviour; and
  3. Onset before adulthood

(The British Psychological Society 2016)

 

1) Intellectual functioning: The person will have significant challenges in general mental ability which includes reasoning, planning, solving problems, thinking abstractly, comprehending complex ideas, learning quickly and learning from experience. Just over 2.4% of people (determined by reference to a normal distribution with the general population) may be expected to have a general level of intellectual functioning commensurate with a diagnosis of a Learning Disability.

 

2) Adaptive behaviour: Concerns 'the collection of conceptual, social and practical skills that have been learned and are performed by people in their everyday lives'.

Examples include:

  • Conceptual skills: language, reading and writing; and money, time and number concepts:
  • Social skills: interpersonal skills, social responsibility, self-esteem, gullibility, naivety (i.e. wariness), follows rules/obeys laws, avoids being victimised, and social problem-solving
  • Practical skills: activities of daily living (personal care), occupational skills, use of money, safety, health care/transportation, schedules/routines, and use of the telephone.

Relative to the general population a person with a Learning Disability has significant difficulties with such activities of daily life.

 

3) Onset before adulthood: Means there should be evidence of the presence of each of the other two criteria before the person attains the age of 18 years

Please click on the relevant term to be taken directly to textual information.

General Information and Management

PohWER is now delivering advocacy services in Gloucestershire:

  • Independent Care Act Advocacy
  • Independent Mental Capacity Advocacy
  • Independent Mental Health Advocacy
  • Independent Health Complaints Advocacy
  • Independent advocacy to eligible individuals wishing to complain about their experience of adult social care

This Mental Capacity Assessment checklist provides a structures checklist to use when determining mental capacity.

Please see the following useful information;

Practice Tips:

If the person has behaviours that challenge it is important to check:

  • What assessment has been carried out to identify possible triggers, environmental factors, any identified pain and function of the behaviour?
  • Is there a behaviour plan and who is co-ordinating this?
  • How often are restrictive interventions being used and how are they being recorded?
  • Are they having positive behavioural support?
  • Is antipsychotic medication being used to control behaviour? Is this regular medication or prn or both?
  • Are they having a multidisciplinary review of their antipsychotic medication 12 weeks after starting treatment and then at least every 6 months?

Please see the National and NICE Guidance section for further information. 

Information on Gloucestershire's Positive Behavioural Support (PBS) Service including how to book a slot and clinic locations can be found here.

Gloucestershire's Challenging Behaviour Concordat 2015 can be found here.

Carers Gloucestershire

Challenging Behaviour Family Development Worker- Dawn Rooke

Tel: 01452 389342 

Email: drooke@carersgloucestershire.org.uk 

Please follow this link to the Challenging Behaviour Project - Helping families of children and adults with Learning Disabilities and behaviour described as challenging

Forwards 1:1 service:

Forwards provides support for people with disabilities, impairments or mental health conditions to find and retain work across Gloucestershire. They provide help and advice with looking for paid and work experience including, work and returning to work benefit guidance, interview preparation and support and in work support. They work with a range of partners to provide holistic support to raise the aspirations of disabled people, their families and other providers.

What type of support do they provide?

  • Diagnostic and action planning- identifying transferrable skills and establishing work goals
  • In work and returning to work benefit guidance
  • Intensive one to one support for people funded by Gloucestershire CCG health budgets to find paid or voluntary work
  • Employer engagement
  • Bespoke training courses
  • CV and Job Applications support
  • Interview preparation and support at interviews
  • In work support including advice on reasonable adjustment and Job Coaching
  • Signposting to other organisations/sources of support

 

Forwards Employment Service (Work Clubs):

Forwards Employment Service offers one to one support for people who are receiving services from health or social care and their work clubs can support anyone finding it difficult to overcome health related barriers to work.

What type of support do they offer?

In partnership with Adult Education Gloucestershire they deliver 6 Work Clubs across the county. The Work Clubs provide a structured programme where they will address the barriers to employment including goal setting, CV preparation, interview skills etc. Partners include employers who will co-deliver some sessions.

Location Contact Details

Cheltenham:

Cheltenham Drop In, 2nd Floor Children's Library, Chester Walk, Clarence Street, Cheltenham, GL50 3JT.

Forwards Work Club:

Cheltenham West End Partnership, Community Resource Centre, Grove Street, Cheltenham, GL50 3LZ.

Tel: 01242244950 
www.forwardsgloucestershire.co.uk

Monday-Friday: 9:30am-4pm.

 

Thursdays: 2-4pm

Cirencester:

Cirencester Drop In, Cirencester Library, The Waterloo, Cirencester, GL7 2PZ.

Forwards Work Club:

Address same as above

Tel: 01285 643768 
www.forwardsgloucestershire.co.uk

Monday-Friday: 9:30am-4pm.

 

Mondays: 10:30am-12:30pm

Coleford:

Coleford Drop In, The Main Place, Old Station Way, Coleford, GL16 8RH

Forwards Work Club: 

Cafe 16, 16 Bank Street, Coleford, GL16 8BA

Tel: 01594 834436 
www.forwardsgloucestershire.co.uk

Monday-Friday: 9:30am-4pm

 

Tuesdays: 1-3pm

Gloucester:

Gloucester Drop In, Library 1st Floor, 51 Brunswick Road, Gloucester, GL1 1HT.

Forwards Work Club: 

Tesco Community Space, St Oswald's Road, Gloucester, GL1 2SG.

Tel: 01452 529663 
www.forwardsgloucestershire.co.uk

Monday-Friday: 9:30am-4pm

 

Wednesdays: 2-4pm.

Stroud:

Stroud Drop In, Stroud Library, Lansdown, Gloucestershire, GL5 1BB.

Forwards Work Club: 

Fresh Ground Cafe, 26 Westward Road, Stroud, GL5 4JQ.

Tel: 01453 757081 
www.forwardsgloucestershire.co.uk

Monday-Friday: 9:30am-4pm

 

Fridays: 10:30-12:30pm

Tewkesbury:

Tewkesbury Drop In, Tewkesbury Library, Sun Street, Tewkesbury, GL20 5NX.

Forwards Work Club:

Address same as above

Tel: 01684 299315 
www.forwardsgloucestershire.co.uk

Tuesday, Wednesday, Friday: 9:30am-4pm.

Thursdays: 2-4pm

Drop in Centre:

  • They send out monthly 'what's on' in your community newsletter to encourage social inclusion, building on friendships and help to prevent isolation
  • They provide advice, guidance and support regarding finances, correspondence and bidding on houses via Homeseekers
  • They can offer guidance to encourage healthy living, providing advice on how to menu plan and on-line shop
  • They offer advice on how to stay safe in the home and the community
  • They are also a 3rd party hate crime reporting venue
  • They can help you sign up to Countywide keep safe scheme
  • The team will support people to problem solve any issues they may have, and refer/sign post to the appropriate service

The drop in welcomes new members to join the committee and help make decisions about the service.

Please follow this link to the Forwards Work Club referral form.

Please see the National and NICE Guidance section for full details on the LeDeR.

The National Development Team for Inclusion (NDTI) have produced a guide for GPs on how to make Reasonable adjustments for people with Learning Disabilities

Please also see:

Investigations and taking blood

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surger
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

NHS England- Building the Right Support 

A national plan to develop community services and close inpatient facilities for people with a Learning Disability and/or autism who display behaviour that challenges, including those with a mental health condition.

NHS England - Housing "Building the Right Home" (2015)

This document helps transforming care partnerships to work with local housing providers and other stakeholders to do what is needed.  This will mean that more people can live in their own home and get the support they need to live healthy, safe and rewarding lives.

NHS England - Care & Treatment Reviews (CTRs)

Care and Treatment Reviews (CTRs) are part of NHS England’s commitment to transforming services for people with Learning Disabilities, autism or both. CTRs are for people whose behaviour is seen as challenging and/or for people with a mental health condition. They are used by commissioners for people living in the community and in Learning Disability and mental health hospitals.

NHS England - Children and Young People

 

Primary Care

Learning difficulty as opposed to Learning Disability?

Some people have specific learning difficulties which do not result in the depth and breadth of intellectual and other difficulties required for the diagnosis of a Learning Disability. Common example of specific learning difficulties include dyslexia and ADHD. Similarly someone with Autism can have normal high intellectual function combined with problems with social skills- These profiles would not meet the criteria for a Learning Disability.

Health Issues vs Learning Disability

People with a Learning Disability are prone to greater health issues than the general population but there is a history of people with a Learning Disability receiving sub-optimal health care- in part as a result of access issues but also as a result of diagnostic overshadowing. It is important to understand how the individual with a Learning Disability normally presents. Changes from 'their normal' may be indicative of an underlying health concern.

Levels of Learning Disability

Remember to ask the person with a Learning Disability, their carer or their accompanying paid staff, if they have any specific concerns or issues they wish to cover whilst performing the health check. It is particularly important to remember to record and then address all these concerns at the end of the health check when preparing the health action plan. Before addressing these concerns you will need to gather all relevant information first, before 'crossing the bridge' and discussing management. Damien Kenny’s navigation path for the consultation [damiankenny.co.uk/navigationtool.pdf] emphasises the importance of gathering all relevant information first, before 'crossing the bridge' and discussing management.

Disability Severity

  • Eu816 - [X]Mild Learning Disability
  • Eu814 - [X]Moderate Learning Disability
  • Eu815 - [X]Severe Learning Disability
  • Eu817 - [X]Profound Learning Disability

 

Mild Learning Disabilities

People with mild Learning Disabilities would have an approximate IQ in the range of 50-69 or a mental age of 9-12 years. Some may not have been diagnosed with Learning Disabilities because they function and adapt well socially.

Characteristics may include:

  • Able to communicate using spoken language and have reasonable skills.
  • May be able to use a mobile phone and text.
  • Likely to have had some Learning Disabilities in school.
  • Difficulties holding down employment.
  • May be able to effectively manage their own personal care needs with minimal support.
  • May have more significant difficulties in expressing ideas and feelings in words.
  • Limited ability to abstract and generalise what they learn.
  • Limited attention-span, slow speech and language development.
  • Difficulties with reading, writing and comprehension. This may in turn affect their self-esteem and confidence.

 

Moderate Learning Disabilities

People with moderate Learning Disabilities would have an approximate IQ in the range of 35-49 or a mental age of 6-9 years. They are likely to have had marked developmental delays identified in childhood, possibly with accompanying impairments such as physical, hearing or visual impairment, autistic spectrum condition (ASC), emotional disturbance or impairment in communication skills. Characteristics may include:

  • Needing varying degrees of regular support to live and work in the community.
  • May have adequate communication skills but are unlikely to be able to use a mobile phone.
  • Can learn to develop some degree of independence in self-care although are likely to need regular supervision and prompting.
  • Likely to need more substantial assistance with communication, managing risk, dealing with social and/or emotional issues and possibly more physical help with mobility, continence, and eating.
  • Likely to need support with literacy and numeracy, including managing money.

 

Severe Learning Disabilities

People with severe Learning Disabilities would have an approximate IQ in the range of 20-34 or a mental age of 3-6 years. They are likely to have had significant delays in reaching their developmental milestones as a child and significant speech and/or communication difficulties. They may also have accompanying impairments such as physical, hearing or visual impairment, autistic spectrum condition (ASC), emotional disturbance or epilepsy. People with severe learning disabilities are likely to have a limited awareness and understanding of themselves, of the people around them and of the world they live in. Characteristics may include:

  • Are likely to be in need of significant continuous support with their day to day lives.
  • Will have a dependence on others to satisfy basic needs such as feeding and toileting, mobility and communication.
  • Unlikely to have learnt self-care skills in these areas.

Most people with severe Learning Disabilities require a high degree of support in managing risk, and possibly their behaviours, and need continual supervision indoors and outdoors.

 

Profound Learning Disabilities

People with profound Learning Disabilities would have an approximate IQ under 20 or a mental age below 3 years. They are likely to have other sensory or physical impairments, complex health needs, have great difficulties in communicating and be multiply disabled. Characteristics may include:

  • Behaviours that challenge those supporting them.
  • Relying on facial expressions, vocal sounds, body language and behaviour to communicate.
  • Using a small range of formal communication, such as speech, symbols or signs.
  • Relying on others to interpret their reactions to events and people, and whether they are in pain.
  • Difficulties in understanding the verbal communication of others.

Some people with profound and multiple Learning Disabilities are fully mobile, but many use a wheelchair, have difficulty with movement and are unable to control or vary their posture efficiently. They need specialised equipment to aid their mobility, to support their posture and to protect and restore their body shape, muscle tone and quality of life. An increasing number of people are described as being ‘technology dependent’, which may mean they need oxygen, tube feeding or suctioning equipment.

People with profound Learning Disabilities will be able to learn skills that generally appear at a very early stage of development, such as cause and effect or turn-taking, but learning is likely to take place very slowly and only with constant repetition.

All children and adults with profound and multiple Learning Disabilities will need high levels of continuous, skilled support for life. This includes help with all aspects of personal care, such as washing, dressing and eating, as well as ensuring that each person has access to high quality and meaningful activity throughout their lives.

The Learning Disabilities health check scheme is one of a number of GP enhanced services. Enhanced services are voluntary reward programmes that cover primary medical services; one of their main aims is to reduce the burden on secondary care services.

Enhanced services are one component of a range of GP contract services, which form part of the General Medical Services (GMS) contract, which is agreed between NHS England and the British Medical Association’s (BMA) General Practitioners Committee (GPC). The GMS contract covers the delivery of primary care services across England. Contract services include

  • core contract components,
  • enhanced services,
  • vaccination and immunisation programmes,
  • the Quality and Outcomes Framework (QOF), and
  • Indicators No Longer in QOF (INLIQ).

Under the Learning Disabilities health check scheme 2017-18, GP practices were encouraged to:

  • Produce a Learning Disabilities ES register of all patients aged 14 years or over with learning disabilities.
  • Offer all of the patients on this register an annual Learning Disabilities health check and perform these health checks where the patients agreed to this. Note that this was an annual health check; therefore, a patient should only have received one health check during the course of this service.
  • Offer all of the patients on this register a health check action plan and produce this health action plan where the patients agreed to this.

 

Payment and management information

Payment count 

  • LDHC001: Quarterly count of registered patients aged 14 years or over, at the 31 March 2018, on the practice’s Learning Disability register who have received a Learning Disability health check and have not received a health check in a previous quarter in this financial year.

 

Management information counts

Where the information for these counts is not available, practices should enter zero:

  • LDHCMI001: Quarterly count of registered patients aged 18 years or over, at the 31 March, on the practice’s Learning Disability register who have received a Learning Disability health check and have not received a health check in a previous quarter in this financial year.
  • LDHCMI002: Quarterly count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, on the practice’s Learning Disability register who have received a Learning Disability health check and have not received a health check in a previous quarter in this financial year.
  • LDHCMI003: Quarterly count of registered patients aged 18 years or over, at the 31 March, on the practice’s Learning Disability register who have declined a Learning Disability health check and have not declined a health check in a previous quarter in this financial year.
  • LDHCMI004: Quarterly count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, on the practice’s Learning Disability register who have declined a Learning Disability health check and have not declined a health check in a previous quarter in this financial year.
  • LDHCMI005: Quarterly (cumulative) count of registered patients aged 18 years or over, at the 31 March, identified as having a QOF diagnostic Learning Disability, as at reporting period end date.
  • LDHCMI006: Quarterly (cumulative) count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, identified as having a QOF diagnostic Learning Disability, as at reporting period end date.
  • LDHCMI007: Quarterly count of registered patients aged 18 years or over, at the 31 March, identified as having a QOF diagnostic Learning Disability who received a learning disability health check in the reporting period.
  • LDHCMI008: Quarterly count of registered patients aged 14 years or over and who have not attained the age of 18 years, as at the 31 March, identified as having a QOF diagnostic Learning Disability who received a Learning Disability health check in the reporting period.
  • LDHCMI009: Quarterly (cumulative) count of registered patients aged 18 years or over, at the 31 March, who have received a Learning Disability health check and have been provided a health action plan, up to the end of the reporting period.
  • LDHCMI010: Quarterly (cumulative) count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, who have received a Learning Disability health check and have been provided a health action plan, up to the end of the reporting period.
  • LDHCMI011: Quarterly (cumulative) count of registered patients aged 18 years or over, at the 31 March, who have received a Learning Disability health check and declined a health action plan, up to the end of the reporting period.
  • LDHCMI012: Quarterly (cumulative) count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, who have received a Learning Disability health check and declined a health action plan, up to the end of the reporting period.
  • LDHCMI013: Quarterly (cumulative) count of registered patients aged 18 years or over, at the 31 March, who have received a Learning Disability health check that have neither received nor declined a health action plan, up to the end of the reporting period.
  • LDHCMI014: Quarterly (cumulative) count of registered patients aged 14 years or over and who have not attained the age of 18 years, at the 31 March, who have received a Learning Disability health check that have neither received nor declined a health action plan, up to the end of the reporting period.

Indicators assessment is needed
Unexplained changes in a persons usual presentation or concerns raised by those who know them well
  • Consider physical health issues
  • Consider psychological issues
  • Consider potential of abuse (physical, sexual, emotional, financial, neglect)
  • Consider recent changes in support

A&E/ambulance service

  • For emergency physical health issues

Refer directly to Crisis Team

  • For a mental health emergency where patient needs to be seen immediately
Primary Care Assessment - Annual Health Check (AHC)

What is an Annual Health Check (AHC)?

People with Learning Disabilities (LD) have poorer physical and mental health than other people and die younger. Many of these deaths are avoidable and not inevitable.

Annual Health Checks help to detect and manage health conditions early, review current treatments are appropriate and to help build continuity of care.  They result in increased investigations, general and specific health assessments, identification of common comorbid disorders, medication reviews, and referrals to secondary care.

In the UK the legislative framework requires primary and secondary care to make reasonable adjustments to be made to policies and practice in order to provide fair access and treatment to people with Learning Disabilities and other disadvantaged groups. The annual health check is a reasonable adjustment

This guide is produced to help GPs, practice nurses and primary administration team organise and perform quality annual health checks on people with a Learning Disability. The NHS Directly Enhanced scheme (DES) offers an annual Health Check for adults and young people aged 14 or above with Learning Disabilities . The aim is identify who may need more health support and who may otherwise have health conditions that go undetected.

A useful Annual Health Check Pack for Primary Care has been produced. Please follow the links below to view;

This is systematic health review of the person with Learning Disabilities’ health

Allow an hour for the health check as you will need to go at the person’s pace.

It is important to recognise that nurses and doctors have different skills in assessing patients with a Learning Disability. Whilst either profession can complete the full examination we recommend the nurse carries out the check of the weight, height, urine analysis and completes the checklist up to the physical examination and then passes the person over to the GP. The GP then reviews the symptoms, performs the physical examination, reviews the medication and completes a written health action plan.

The combination of providing a multidisciplinary health care assessment will maximise the quality and the health outcomes for the person with LD.

Some patients with Learning Disabilities may find dealing with two different professionals creates more anxiety, so a flexible approach is recommended depending on the needs of the patient.

The health check is ideally split into two half an hour appointments, which are sequentially arranged with the practice nurse and then the patient’s usual GP. Practice nurses and GPs will find the following Royal College of Nursing publication useful:  Dignity in health care for people with Learning Disabilities.

Start by collecting the person and their supporter from the waiting room rather than using the intercom so you can greet them and observe their mobility coming into the consultation room.

Ensuring patients with a Learning Disability are on the GP disability register will lead to better healthcare outcomes for this often disadvantaged group. Once on the register all those eligible (aged 14 and over) are entitled to an Annual Health Check (AHC)- helping reduce recognised health inequalities.

The new national electronic Annual Health Check (Learning Disabilities) clinical template has been produced to aid GPs with this enhanced service health check. This template is currently available on EMIS & Vision with plans for System1 to go live during Autumn 2017.

A primary care pathway is currently being developed to assist practices to identify which sections of the AHC a practice nurse can undertake and which should be undertaken by a GP. More information to follow...

Where to find the AHC Templates

1. Emis users: The template is in EMIS Library > Primary Care Templates > Learning Disabilities HCAP. The template is active, the protocol is inactive.

The protocol - To activate the protocol, go into the templates manager and then navigate to EMIS Library > EMIS Protocols > DES Protocols its in as Health Check Action Plan Launch and Print Protocol. Right click on it, select Status and click activate. It will then be available to add to your F12 menu. This way whenever the template is needed, press F12 on the computer keyboard and select Health Action Plan Launch and Print Protocol from the menu. For more guidance please click here.

2. Vision users: For Vision users instructions for downloading templates can be found here.

3. System1 users: 

Step 1 = Within SystmOne, click on Setup, then Data Entry, then New Template Maintenance

Step 2 = Type 'learn disabil' in the search option on the top left hand side under 'new template icon'

Step 3 = Click show/hide template details (last icon on the right under 'search results for learn disabil'

Step 4 = Select template version 14 - amended on 1st November

 

Annual Health Check Invitation

Please follow this link for the Invitation for an Annual Health Check and Health Check Action Plan.

Pre-health Check Questionnaire and Access Need Letter

The pre-health check questionnaire (link below) follows NHS England Annual Health Check electronic template now on Emis, System 1 and Vision.

  • Helps patient and care understand content of the health check
  • Identifies any relevant issues prior to attending appointment
  • Allows information to be gathered prior to appointment, which may be otherwise unknown to paid carer accompanying the patient

GP easy read Access needs letter

Pre health questionnaire GP screen 

It is important to check with the person with LD that they agree to have any supporters or carers in with them.

It may be helpful to have part of the check without the carer/supporter in the room.

At an annual health check you don’t usually need to formally assess capacity to consent unless you are going to examine genitalia, breasts or perform an invasive procedure.

If you need to assess capacity, document your assessment and ensure your records include as a minimum the following information

  • C - Communicate. Can the person communicate their decision?
  • U - Understand. Can they understand the information you giving them?
  • R - Retain. Can they retain the information given to them?
  • B - Balance. Can they balance or use the information?

If you assess that the person does not have capacity to consent to the procedure consider the principles of ‘best interests’ that need to be used. In this situation, you will need to involve any paid staff and family carers. Your combined findings will need to recorded in the clinical notes. In most people with LD it will be in their best interests to have an annual health check.

The RCGP Mental Capacity toolkit has a template, which may help you with best interest decisions.

A summary and overview of the Learning Disability Annual Health Check electronic clinical template (2017)

This document from NHS England provides a content summary and overview of the new National Electronic Health Check template for people with Learning Disabilities, agreed as part of the GP contract to be initiated from April 2017

Encourage creation of Summary Care Record with Additional Information for all patients with their consent. This may require Mental Capacity Act (MCA) involvement or may be a 'best interest' decision. Only withhold if patient refuses.

For patients aged under 18 obtain parental consent or consider 'Fraser Competence'.

The Summary care record (SCR) in England is an electronic record of important patient information, created from the GP medical records. It can be seen and used by authorised staff in other areas of the health care system involved in the patient’s direct care.

GPs can include additional information by changing the patient's consent status on the clinical system used in the practice, to 'Express consent for medication, allergies, adverse reactions and additional information'.

GP Staff will need activity B0020 on their smartcard to do this. It adds read code 9Ndn or CTV3 code XaXbZ to the record. Once consent status is changed, coded items and the supporting free text will be added.

This will include:

• Significant medical history (past and present).

• Reason for medication.

• Anticipatory care information (such as information about the management of long term conditions).

• Communication preferences.

• End of life care information.

• Immunisations.

Please see the Summary Care Record Information - Toolkit for GP Practices (June 2016) and Information Leaflet for patients

The Royal College of General Practitioners (RCGP) has published the new Annual Health Check Step-by-Step guide in the form of a toolkit. This collects guidance and resources to help GPs, practice nurses and the primary administration team organise and perform quality Annual Health Checks on people with a Learning Disability.

Please click here to view the Annual Health Check Toolkit.

Quality Checking Health Checks for People with Learning Disabilities

This brief audit tool is designed to support practices, primary care liaison staff, health facilitators and others to improve the uptake and quality of annual health checks and thereby reduce the health inequalities experienced by people with Learning Disabilities

Annual health checks for patients with a Learning Disability. Please click to open the information sheet for Practice Nurses.

Initiative to improve uptake of adults with a Learning Disability being invited to an Annual Health Check

2gether NHS Foundation Trust’s Children & Young People Service (CYPS), Learning Disability Team have developed cards (for both adults and children/young people) to enable their patients to notify their GP, to ensure their name is included on the LD register. This will be helpful in ensuring patients can be invited for an annual health check and offered a summary care record with additional information (SCR-AI).Please follow the links below to the Promotion Cards:

What do practices need to do?

If a patient/parent/carer brings in the above card please can the practice check whether the person is already on the GP QoF Register. If they aren’t can the practice check the persons Learning Disability is properly recorded in their record and then ensure they are added to the Learning Disability register. 

A new website “Supercharged me” launched August 2019 to encourage people with Learning Disabilities to book their Annual Health Check. Please see the following for further info:

Transition

Learning Disabilities Transition Pathway Framework - NICE and Health Education England

  • This document was commissioned by Health Education England to support the development of people working in services with young people with Learning Disabilities as they lead up to and make the transition from children’s to adults’ service provision.

Who pays?- Determining responsibility for payments to providers (August 2013)

This document sets out the framework for establishing responsibility for commissioning an individual's care within the NHS and determining who pays for a patient’s care

Moving between NHS providers:

Please follow this link to the Department of Health National Guidance on Ordinary Residence, October 13 which explains how to decide where a person is ordinarily resident for the purposes of the National Assistance Act 1948 and certain other legislation.

Social Care – GCC Ordinary Residency Policy 2015

NHS

Continuing Health care -

  1. Out of county placements & who funds =

The section 24(6) deeming provision was extended by section 148(1) of the Health and Social Care Act 2008 to apply in all settings where NHS accommodation is provided. This amendment is to reflect changes to the way in which NHS services are being delivered. NHS care is no longer always provided in traditional NHS hospital settings: in order to improve efficiency and flexibility, the NHS is increasingly making use of the independent sector to deliver its services (although such services remain funded by the NHS). Therefore, the amended deeming provision ensures that people living in independent sector residential accommodation which is funded by the NHS, for example those people in receipt of NHS CHC, do not acquire an ordinary residence in that area.

  1. Role of social care when CHC eligible =

Where a person is in receipt of NHS CHC, local authorities do not have a duty to provide social care services that are being provided by the NHS, although they do continue to have a wider role, for example in relation to safeguarding responsibilities. However, if a care review subsequently determines that a person’s needs no longer meet the eligibility criteria for NHS CHC - perhaps because they needed intensive health and social care following an operation and they have now recovered - the NHS ceases to be responsible for the provision of the person’s social care. Instead, the duty for the provision of social care falls to the local authority in which the person is ordinarily resident.

Joint packages of health & community care services

LD and Cancer Screening

People with Learning Disabilities have poorer health and are more likely to die at a younger age than people in the general population, in part because of poor access to health services. Evidence suggests they’re at a much higher risk of gastrointestinal cancer. It’s likely that the rates and pattern of cancer among people with Learning Disabilities is changing as they’re living longer.

Research shows that there are many practical barriers to various types of cancer screening.

These may include:

  • lack of routine use of easy-read invitations
  • difficulties using appointment systems
  • time pressures
  • mobility issues
  • communication difficulties

It’s been well documented over some years that women with Learning Disabilities have a much lower participation rate in cervical and breast screening programmes than women in the general population. This has been more comprehensively documented by the Learning Disability Health and Care dataset collected by NHS Digital.

Making reasonable adjustments to Cancer Screening

Cornwall Cancer Screening Team supported by Department of Health

This guidance has been produced to promote the importance of cancer screening in people with Learning Disabilities. The document includes information on breast screening, cervical screening and bowel screening

 

Reasonable adjustments for people with LD - Cancer Screening

Public Health England (Updated 26 September 2017)

This guidance includes information on cancer screening for people with Learning Disabilities including the following;

  • Evidence and research
  • Barriers to uptake
  • Improving uptake through education
  • Policy and guidance
  • Consent and capacity
  • Cancer screening problems experienced by people with Learning Disabilities
  • Further easy read resources​

Bowel Cancer Screening - Age range 60-75:

  • 686A - BCSP faecal occult blood test normal
  • 686B - BCSP faecal occult blood test abnormal
  • 9Ow2 - No response to bowel cancer screening programme invitation

Female Screening:

Health ed. - breast exam

  • 6795 - Health ed. - breast exam.

 

Mammography

  • 9OHF - Breast screening offered
  • 9OHD - Breast screening declined

 

Smear Test

  • 6856 - Ca cervix screen - up to date
  • 6855 - Ca cervix screen - not needed
  • 6852 - Ca cervix screen - offered

 

Male Screening

Health ed. testicular examin. (679B - Health ed. testicular examin

LD and Constipation

LD and Constipation

Constipation is a frequent cause of unnecessary hospital admission as a significant number of people with Learning Disabilities suffer from constipation and is often not considered a worrying health problem. A European study of adults with Learning Disabilities living in institutions found that almost 70% of them had constipation compared to 15% in the general population.

  • Inadequate diet and fluid intake
  • Reduced mobility and lack of exercise
  • Side effects of certain medications especially antipsychotics, antidepressants, anticonvulsants, drugs with antimuscarinic (anticholinergic) effects, opioid analgesics, aluminium salts in reflux medication, iron, calcium salts, calcium channel blockers or diuretics
  • Anxiety or depression.

People with Down’s syndrome or cerebral palsy have an increased risk of constipation. Other medical conditions that exacerbate constipation include hypothyroidism, depression and diabetes. People with more severe Learning Disabilities are at an even higher risk of constipation partly relating to medication, being non-ambulant and body shape and/ or abnormal muscle tone.

  • Inappropriate toileting facilities or a lack of privacy or time to use them can cause constipation.
  • Disruption in someone’s routine or changes to their care or environment can all negatively affect bowel habits.
  • Ignoring the urge to pass stools can cause constipation.

Treatment is usually effective if started promptly but if it not, constipation can lead to more complex problems. As a consequence of continual straining to try to pass stools people can experience rectal bleeding, which may be the result of anal fissures, haemorrhoids or rectal prolapse. In extreme cases, the symptoms of long-term constipation can lead to death. In 2014, the Safeguarding Adults Board in Suffolk commissioned two Serious Case Reviews (SCRs) into the deaths of two people with Learning Disabilities. Their deaths occurred in the same hospital within a six-month period and were from complications related to faecal impaction.

  1. Bowel history and habit
  2. Bowel surgery or investigations.
  3. Medication – this should be reviewed and changes considered to medications which are exacerbating constipation.
  4. Diet and fluid intake – consider increasing fluids: >2 litres per day.
  5. Physical ability.
  6. Physical activity- consider how to increase physical activity.
  7. Physical interventions – check the bathroom is well ventilated, warm and clean. Check there is enough space, toilet height, adequate privacy and a lack of distractions.

  1. Try to link the toileting plan with the usual time that the person opens their bowels. This may be in the morning, after lunch or after the evening meal. This may require some planning and time management. They should be encouraged to sit on the toilet for 10 minutes and if they open their bowels in this time they should be rewarded. Check that the person can respond immediately to the sensation of needing to open their bowels. People with mobility problems should have help to get to the toilet when they need it.
  2. Refer to Physiotherapy to increase physical activity opportunities.
  3. Refer to Dietician to review fluid and food intake.
  4. Refer to continence advice service if you require advice on the best laxative/enema for a specific individual.
  5. Refer to Occupational therapy for adapted seating to improve toileting position.
  6. Refer to Physiotherapy for abdominal massage treatment/training as this has been shown to improve stool frequency and rectal loading and has no known side effects.
  7. Refer to psychology if there are underlying anxieties impacting on constipation.

Reasonable adjustments for people with LD - Constipation

Public Health England (Updated 26 September 2017)

This guidance includes information on constipation in people with Learning Disabilities including the following;

  • Prevalence of constipation in people with Learning Disabilities
  • Impact of constipation
  • Bowel management to avoid constipation
  • Other resources (including easy read)

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

  • 19C1 - Not constipated
  • 19C2 - Constipated

Management of chronic constipation of adults with a Learning Disability in the community

National Development Team for Inclusion (2016)

This guideline can help staff to identify the likely cause of constipation and the possible solutions.

LD and Diabetes

People with Learning Disabilities are more prone to diabetes due to sedentary lifestyles and obesity. The condition is often undiagnosed and needs to be monitored and managed effectively. 

  • Safety is paramount – targets for diabetes and other metabolic parameters should be the same but coexisting factors may indicate a need for a different approach
  • Avoid symptomatic hyperglycaemia and aim for best level of glycaemic control whilst preventing hypoglycaemia
  • Manage coexisting diseases, reduce functional disability, and improve quality of life
  • Engender a positive attitude to patients’ condition and carefully consider their ability to understand and participate in their care/treatment.
  • Ensure a Mental Capacity Assessment is carried out if it is considered that the person may not fully understand their condition and a subsequent Best Interest discussion should take place with people who know the person well in order to plan care

  • Formulate a clearly written care plan (see below)
  • Set realistic goals: overzealous application of clinical targets may compromise quality of life
  • Consider limitations imposed by other factors
    • Nature of disability
    • Mobility
    • Activities of daily living
    • Social support – home circumstances, carers etc.
  • Current medication – understanding and compliance with regular regimes, use of aids i.e. a monitored dosage system (MDS)
  • Lifestyle choices – understanding and compliance with special diets, exercise and activities (consider Mental Capacity Assessments)
  • Interrelationship with co-existing epilepsy (see below)
  • Liaise with Learning Disability Services if specialist support is required (Adult Learning Disability Teams, Health Facilitation Service, Sensory Impairment Service, Acute Liaison Nurses)
  • Review above issues on ongoing basis

A clearly written diabetes care plan needs to be drawn up for each patient. This may include information about the following:

  • Named diabetes lead
  • Contact numbers for advice
  • Medication type, dose and timing
  • Type and frequency of home testing
  • Blood glucose targets
  • Action to be taken if home testing results are out of range
  • Where appropriate, treatment for hypoglycaemia
  • Action to be taken during sickness
  • When urgent action needs to be taken e.g. development of foot ulcer, diabetic ketoacidosis
  • When reviews are to be expected

This is not an exhaustive list but the care plan needs to be tailored to the needs and circumstances of each individual patient.

People with Learning Disabilities have a high prevalence of epilepsy; up to 20% with mild Learning Disabilities and up to 40% with severe Learning Disabilities.

  • Hypoglycaemia may mimic, precipitate or follow an epileptic seizure.
  • It is important to consider checking a blood glucose level when a fit occurs.
  • Extra carbohydrate may be required following an energy demanding Tonic Clonic seizure.

Frequent hypoglycaemia should necessitate a review of diabetes treatment

NHS RightCare Pathway: Diabetes

Reasonable adjustments for people with a Learning Disability who have diabetes.

This guidance is aimed at commissioners and providers of diabetes services working with people who have a Learning Disability and diabetes.

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

Diabetes mellitus

Follow Diabetes standard monitoring guidance

Latest HbA1c - If not in last 12 months consider test request

Latest Diabetic Retinopathy Screening

LD and Downs Syndrome

Some health problems are more common among people with Down syndrome than among the general population. However, given knowledgeable and well-resourced medical care, most of these can be successfully treated or managed

Virtually all of the health issues that occur in people with Down syndrome also occur throughout the wider population. Therefore, general advances in medical care for all children and adults have also benefited those with Down syndrome. General medical advances and equal access to them are the main reasons for the increased life expectancy observed for people with Down syndrome in developed countries

Respiratory infections are more common among people with Down syndrome, especially during the first five years of life. Infections of the skin and the bladder also tend to be common. There is evidence that people with Down syndrome have this increased susceptibility to infection because their immune systems have some abnormalities, though the mechanisms involved remain unclear.

Heart defects occur in around 47% of individuals with Down syndrome and 10 to 15% of babies with Down syndrome have a severe heart defect that requires surgical intervention during the first few months of life. The ability to repair major heart defects has had a major impact on infant survival for children with Down syndrome in countries with appropriate facilities and expertise. Almost all babies with Down syndrome who have a severe heart defect would die by school age without modern cardiac surgery. With early surgical intervention, 80%-90% of these infants survive beyond 5 years of age.

Children with Down syndrome have a 10 to 20 fold increased risk of developing leukaemia. The cumulative risk for leukaemia by the age of 5 years is around 2%. Many children with Down syndrome and acute leukaemia can be successfully treated with appropriate treatment

Thyroid disorders are more prevalent among individuals with Down syndrome. The exact extent and mechanisms of thyroid abnormalities, effective screening regimes and treatment approaches remain an area of active research and debate. Once diagnosed, hypothyroidism can be simply and effectively treated, though this treatment and further monitoring is required throughout the individual's life.

Up to 80% of children with Down syndrome experience hearing loss, sometimes severe. Even mild hearing loss will lead to difficulties in speech and language development.

A number of factors have been identified as contributing to hearing loss among people with Down syndrome, including increased incidence of chronic ear diseases, partly due to anatomical differences and also exacerbated by weaker immune systems. Common problems include wax in the external ear canal, conductive loss due to 'glue' in the middle ear, middle ear infections and sensori-neural hearing loss.

Hearing is vital for mental development and learning, especially for the development of speech and language and social skills. Although a mild hearing loss is not usually considered serious in other children, it may have a significant effect on learning for children with Down syndrome. While 'glue ear' may only lead to mild or moderate hearing losses (30dB to 60dB) this will make hearing and discriminating words much more difficult for children learning new words (for example, “cat”, “hat”, “mat” and “sat” may all sound like “a”). Hearing loss will also interfere with the accurate perception and subsequent production of speech sounds. In other words, hearing loss will delay vocabulary acquisition and compromise clear speech.

A variety of interventions are now available to treat or ameliorate the effects of hearing loss. Where children are having difficulty earning to talk because of hearing loss, signing may also help. However, there are potential complications associated with some treatments and longitudinal studies examining long-term developmental outcomes are required to investigate overall benefits.

People with Down syndrome are more likely to experience vision disorders such as short sightedness, long sightedness and astigmatism. They are also more likely to have squints and to experience delays in developing effective focusing, depth perception and sharpness of vision. Many of these problems can be corrected to give good vision with the use of spectacles.

Studies have reported a high incidence of sleep disturbance among children and adolescents with Down syndrome. Poor sleep can lead to behaviour problems and impair learning. Unfortunately, we do not understand enough about diagnosing or treating sleep problems in children with Down syndrome.

Although physiological indications associated with Alzheimer disease are present at death in almost all people with Down syndrome over the age of 30, the observed prevalence of dementia of the Alzheimer type varies widely. Recent population-based studies of adults with Down syndrome have observed Alzheimer-type dementia in approximately 10% of those aged 40 to 49 years and 26% of those aged 50 and over.

Although most people with Down syndrome do not have psychiatric or neurobehavioral disorders, there is an increased prevalence of behavioural, autism-spectrum and attention deficit disorders among young people with Down syndrome. One study has suggested that the incidence of autism spectrum disorders among children with Down syndrome may be as high as 7% compared with less than 1% in the general population.

Investigations and taking blood

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

LD and Dyspagia

Dysphagia (difficulties in eating, drinking or swallowing) is common in people with Learning Disabilities. This can lead to serious health issues including malnutrition, dehydration, aspiration and asphyxiation. Improved recognition and management of dysphagia may reduce: 

  • Occurrence of associated health conditions.
  • Hospital admissions.
  • Premature death in people with Learning Disabilities.

  • ‘Bubbly’ voice quality.
  • Cerebral palsy.
  • Coughing during and/or after meals.
  • Dementia.
  • Dysarthria.
  • Failure to maintain weight.
  • History of choking episodes.
  • History of frequent chest infections.
  • Regurgitation.
  • Severe and complex disabilities
  • Shortness of breath when eating or drinking.
  • Slow eating and/or refusing food.
  • Stroke.

  • Request a speech and language therapy (SLT) dysphagia assessment.
  • Conduct a simple physical examination of oro-pharyngeal cavity.
  • Review medication for drugs with sedative or cholinergic side effects.
  • Look for evidence of weight loss and malnutrition (Use MUST tool).31
  • Consider haematological/ biochemical/ radiological assessment including videofluoroscopy (this may be requested by the speech and language therapist).
  • Consider co-existent or other pathologies.
  • Consider other causes including oesophageal stricture with or without regurgitation.
  • Consider referral to colleagues in dietetics services for advice about diet and food consistency and a Learning Disabilities specialist physiotherapist.

Reasonable adjustments for people with LD - Swallowing difficulties (dysphagia)

Public Health England (Updated 26 September 2017)

This document provides information about the recognition, diagnosis and management of dysphagia in adults with Learning Disability. An easy read version can be found here.

Investigations and taking blood

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

  • 194-1 - Dysphagia
  • R072 - [D]Dysphagia
  • 1941 - No problem swallowing
LD and End of life care

Delivering high quality end of life care for people who have a Learning Disability

NHS England

This 'top tips' guide aims to support commissioners, providers and clinicians to reduce inequalities in palliative and end of life for people with a Learning Disability, focusing on 'The Ambitions for Palliative and End of Life Care' (2015) national framework which is available here.

Top Tips

  • Support people with a Learning Disability to develop their awareness about death and dying
  • Involve families /friends/supporters and the person’s usual paid carers as partners in care
  • Support people to engage in Advance Care Planning (ACP) (ensuring mental capacity is considered). If the person is assessed as not having mental capacity to create an ACP it is still very important to ensure the person can express their end of life preferences and participate in personalised care and support planning
  • Remember bereavement support for those left behind is an important part of palliative and end of life care

  • Identify those people with a Learning Disability, who are in their last year of life, as early as possible
  • Identify and make the reasonable adjustments needed to ensure people with a Learning Disability can access the end of life care they need. Making reasonable adjustments is a legal requirement under the Equality Act 2010
  • Ensure ALL professional groups have an awareness of end of life care in people with a Learning Disability

  • Help the person to understand their illness and symptoms
  • Support the person to prepare for a visit to hospital or a hospice
  • Be creative in relieving psychological distress and improving wellbeing
  • Identify distress by comparing the person’s current presentation to their baseline
  • Carry out an effective and appropriate person centred pain assessment. Ways of assessing pain for the general population may need to be adapted for people with a Learning Disability where communicating pain verbally may be difficult 

  • Involve the person and families/friends/supporters and the person’s usual paid carers as partners in care
  • Ensure the person’s end of life care preferences and needs are recorded in electronic records to facilitate access by all those involved in their care and support. The GP should complete the end of life planning section in the GP Health Check Action Plan following the Annual Health Check which will link to the Summary Care Record. Where available, preferences should also be recorded in Electronic Palliative Care Coordination Systems (EPaCCS)
  • Coordinate the involvement of staff from different organisations (and also the involvement of staff within the same organisation)
  • When commissioning end of life care for people with a Learning Disability include the use of local/voluntary/third sector services as well as NHS and social care services 

  • Support staff and build resilience
  • Cross sector training is required to ensure staff working in specialist Learning Disability services have access to palliative and end of life care training and that those working within palliative and end of life care services receive learning disability training
  • Ensure ALL staff groups have an awareness that those with a Learning Disability may require reasonable adjustments to achieve a good end of life care experience
  • Staff need to have excellent communication skills and adapt these to the needs of the people they support 

  • Ensure people with a Learning Disability are considered to be a part of the local community
  • Encourage discussion around death and dying amongst everyone, not just people with a Learning Disability
  • Involve charities/voluntary sector and understand their offer

 

A-Z of End of Life Care Information Resources

The purpose of the A-Z of Resources is to support professionals who provide End of life care to maintain their knowledge and skills or to gain information on a new aspect of care in order to deliver good quality care to achieve the aim of the End of life care strategy.

When printing please select 'print on both sides - flip pages on short edge'.

LD and Epilepsy

About 30% of people with LD also have some form of epilepsy with the prevalence increasing with the increase in severity of the LD. In people without LD, over 50% are seizure free with one anticonvulsant but this figure is significantly lower in people with LD. In people with LD there is a higher incidence of difficult to treat seizures that requires 2 or more anticonvulsants. As well as checking about fit frequency and rescue medicine for status epilepticus if appropriate.

Check if the seizures are controlled with current medication and the person has any recognised side effects or behavioural changes.

Review if a Consultant Neurologist and or a specialist epilepsy nurse have seen the person and consider if a referral is required for poor seizure control or consideration of medication reduction if the person has been seizure free for several years.

Late-onset myoclonic epilepsy in Down syndrome (LOMEDS) is characterised by seizure onset after 40 years of age, myoclonic jerks, occasional tonic–clonic seizures, and progressive dementia.

Key Point

  • Diagnosis of epilepsy in patients with Learning Disabilities can be difficult. Confusion may arise between sterotypical or other behaviours and seizure activity
  • Particular attention should be paid to the possibility of adverse cognitive and behavioural effects of anti-epileptic drug (AED) therapy
  • All adults with epilepsy and Learning Disabilities should have a risk assessment - e.g. bathing and showering, preparing food, using electrical equipment, the suitability of independent living

Making reasonable adjustments to epilepsy services for people with Learning Disabilities

Public Health England

This report is the eighth in a series of reports looking at reasonable adjustments in a specific service area (see Appendix A). The aim of these reports is to share information, ideas and good practice in relation to the provision of reasonable adjustments. 

Investigations and taking blood

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

  • F25 - Epilepsy
  • 1473 - H/O: epilepsy

 

Seizure Frequency

  • 667F - Seizure free >12 months
  • 667Q - 1 to 12 seizures a year
  • 667R - 2 to 4 seizures a month
  • 667S - 1 to 7 seizures a week

 

  • 667v – Many seizures a day

Specialist Epilepsy Care?

  • 9NN5 - Under care of psychiatrist
  • 9NNf4 - Under care of neurologist
LD and Mental Health

Mental health problems and emotional difficulties can be as important as physical health problems for people with cerebral palsy and are often compounded by communication difficulties.

Psychiatric disorders are more prevalent in people with Learning Disabilities compared with the general population. Schizophrenia, depression, anxiety and pre-senile dementia are all common in this group.

You will need to adjust your assessment depending on the level of a person’s intellectual ability, especially their memory and communication. Patients with mild LD may be capable of reporting emotions such as anxiety and depression as well as psychotic symptoms, such as hallucinations or delusions. Patients with severe LD rarely have this ability and you will need to rely on direct observation or staff reporting than self-reporting.

  • Loss of skills or needing more prompting to use skills.
  • Social withdrawal.
  • Irritability.
  • Avoidance.
  • Agitation.
  • Loss of interest in activities they usually enjoy.

  • Pain or discomfort.
  • Frustration associated with communication difficulties.
  • Social factors, such as a change in home circumstances or care provision.
  • Side effects and drug interactions of multiple medicines (polypharmacy).

If you identify an issue try to cover:

  • An understanding of the nature of the problem and its development.
  • Precipitating and maintaining factors.
  • Any protective factors.
  • The potential benefits, side effects and harms of any interventions.
  • The potential difficulties with delivering interventions.
  • The reasonable adjustments needed to deliver interventions.
  • The impact of the mental health problem and associated risk factors on providing care and treatment.

Consider the developmental and clinical comorbidities, and recognise that these can have an important impact on wellbeing, function and participation. 
LD and Pain, discomfort and distress

Due to associated problems with communication, pain can often be expressed in a behavioural change. Pain assessments for people with Learning Disabilities monitor physiological and behavioural symptoms as well as facial expressions.

Unfortunately pain is common in people with cerebral palsy, especially those with more severe motor impairment, and, together with any carer who is familiar with person, you will need to discuss and address this.

  • Musculoskeletal problems (for example, scoliosis, hip subluxation and dislocation).
  • Increased muscle tone (including dystonia and spasticity).
  • Muscle fatigue and immobility.
  • Constipation.
  • Vomiting.
  • Gastro-oesophageal reflux disease.

At the same time recognise that usual causes of pain, discomfort and distress that affect young people generally also occur in those with cerebral palsy, and that difficulties with communication and perception may make identifying the cause more challenging.

  • Non-specific back pain.
  • Headache.
  • Non-specific abdominal pain.
  • Dental pain.
  • Dysmenorrhea.

 

Tools to aid assessment of pain and discomfort

Pain profile and assessment of pain

This pain profile and assessment of pain easy read leaflet for patients includes sections on;

  • my pain medication
  • my usual self (when happy and comfortable)
  • things that make me feel more comfortable
  • assessment of my pain

 

The Disability Distress Assessment Tool

In the late 1990’s a combined Learning Disability and palliative care team at Northgate Hospital in Northumberland, UK, began to explore the issue of identifying distress in people with severe communication difficulties.

The team gradually realised that what was needed was the development of a process that:

  • Identified distress, rather than pain
  • Documented signs and behaviours when a person was content and when they were distressed
  • Helped to put the distress into context by providing a checklist that suggested possible causes of distress.

The team piloted an early version of DisDAT in 2001 and in 2003 completed a validation study under the auspices of Northumbria University which was published in 2006 (see references).

These studies found that:
- distress signs and behaviours are not specific to the cause
- each person has their own ‘vocabulary’ of distress signs and behaviours
- teams pick up more signs and behaviours than any one individual
- DisDAT documents identify distress accurately and carers find it easy to use.

LD and Postural Management

If the patient is immobile, consider postural care needs

Many people with a Learning Disability will have associated physical needs that can restrict their mobility and affect their body shape and posture. This particularly affects those with a profound and multiple Learning Disability and those with cerebral palsy. Postural care is defined as support to protect someone’s body shape by using the right equipment and positioning techniques at the same time aiming to help restore body shape. The equipment is often referred to as sleeping and sitting systems.

However equipment is only part of the postural care and they also need to have access to physiotherapy, occupational therapy and hydrotherapy. At the same time their carers need to receive training to enable them to manage their physical needs confidently on a day-to-day basis.

When asking about postural care check:

  • Is the equipment working help their mobility, to support their posture and to protect and restore their body shape, muscle tone and quality of life?
  • Are there any issues with the equipment?
  • Is the equipment being maintained or does it need replacing?
  • What access does the person have to physiotherapy, occupational therapy and hydrotherapy?
  • Are the carers being training using the using the equipment?

It is estimated there are approximately 16,000 adults with profound learning and multiple disabilities in England now and that this number is estimated to increase by on average 1.8% each year to 2026. Click here for information

LD and Substance Misuse

People with Learning Disabilities have an increased risk of substance misuse if they:

  • have borderline/mild Learning Disabilities
  • are young and male
  • have mental health problems.

Other risk factors for substance misuse include:

  • living independently
  • boredom or lack of meaningful occupation
  • desire to be socially included/loneliness
  • limited social skills or low self-esteem
  • lack of family contact
  • impulsivity
  • negative life events, for example, neglect, abuse and bereavement
  • unemployment
  • poverty

Substance misuse has negative and social effects on people with Learning Disabilities. These have been shown to include:

  • deterioration in physical and mental health
  • alienation/social difficulties
  • cognitive deficits
  • aggression/mood changes
  • verbal and physical aggression
  • risk-taking behaviour including suicide
  • increased epileptic seizures
  • inpatient admissions
  • greater risk of offending behaviour – people in forensic Learning Disability services
  • often have problems with substance misuse
  • being vulnerable to exploitation
  • financial impact, including potential loss of housing
  • effects of stopping prescribed medication to be able to drink alcohol

Substance misuse and people with Learning Disabilities: making reasonable adjustments to services 

Public Health England

This guidance is to help professionals in drug and alcohol teams or Learning Disability teams support people with Learning Disabilities who have substance misuse problems. It summarises what the research tells us about the particular problems faced by this group of people and what approaches work best.

 

Investigations and taking blood

Consider clinically relevant blood tests according to current guidelines. Consider point of care testing as appropriate

Remember also:

  • Lithium and anti-epilepsy drug levels
  • Vitamin D if on anti-epilepsy drug
  • FSH in prolonged amenorrhoea
  • PSA (if indicated)
  • CRP (if indicated)
  • Stool H pylori antigen (if indicated).

Timely blood tests and injections remain essential for preventing illness, monitoring the health and effects medication in people with LD. The Confidential Inquiry into the Deaths of People with Learning Disability CIPOLD recommended people with LD to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently.

Having a blood test or having an injection can cause distress to some people with a Learning Disability and consideration needs to be given to desensitisation and reasonable adjustments. Assessing capacity is essential. If they are not able to give consent then a best interest process should instigated started to involve the paid staff, family carers members and all relevant professionals.

Reasonable adjustments can include:

  • Considering less invasive options:
    - Test blood using a finger prick. Many surgeries can do urine and blood glucose Point of Care Testing (POCT) measurements and some can measure lipds.
    - Some laboratories can do thyroid testing using a finger prick
    - Drug level monitoring being done by saliva testing. Some laboratories are able to measure lithium and anticonvulsant levels.
  • Offer longer visits:
    - Arrange longer visits, preferably at a quiet time in the surgery
  • Meet the phlebotomist before on a separate visit(s)
  • Use easy read material to explain the need for the test or injection
  • Have someone well known to the person with LD to talk and distract
  • Offer Home Visits.
  • Buzzy® is a vibrating 'bee' shaped device with ice pack. This cooling vibration analgesia device reduced pain in children with cognitive impairment during vascular access.
  • Use EMLA cream® 5%. https://www.medicines.org.uk/emc/medicine/171. For children over 12 year and adults use a 5g tube, using half the tube on 2 sites:
    - Before using the cream identify 2 sites where veins are visible and accessible.
    - At least 1 hour before and not more than 5 hours before the blood test put the cream on to the skin in a thick layer and do not rub it in.
    - Cover the cream with the plastic wrap.
    - Take off the plastic wrap just before the procedure starts.
    - Choose the initial site where the venesection is more likely to be successful.
    - Consider using a butterfly needle if the person is likely to move their arm.
  • Ametop Gel® contains the anaesthetic tetracaine. It is licensed for children over one month of age:
    - Apply the contents of tube to site and cover with occlusive dressing; remove gel and dressing after 30 minutes for venepuncture and after 45 minutes for venous cannulation. For children over 5 years and adults, the contents of a maximum of 5 tubes can be applied at separate sites at a single time. For a CHILD aged 1 month–5 years, contents of maximum of 1 tube applied at separate sites at a single time
    - The site will remain numb for four to six hours.
    - Ametop® increases the size of the blood vessels where it has been applied and can cause temporary redness. This is quite common and due to the action of the cream. It should be removed with a tissue before the procedure
  • Ethyl chloride (Cryogesic®) acts as a local analgesic (pain relief) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant:
    - A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
    - It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes.
    - It can be very useful for those who are allergic to topical anaesthetics, or for those who get very upset when the cream is applied before tests.
  • Contact the Community Learning Disabilities team / LD Intensive Health Outreach Team (IHOT) to arrange a planned desensitisation programme which is individually designed to work with the individual with a planned date for completion.

If the person is unable to give consent for the procedure and it is the best interests for the person with LD to have the injection or venesection, consider contacting the LD IHOT to consider:

  • safe-holding

and/or

  • sedation – This will usually require advice from the CLDT to decide what medication to use.

This will usually be a small dose of a short-acting sedative, such as oral orazepam or diazepam. Conscious sedation using buccal midazolam should be only be used a last resort and will need flumazenil available to potentially reverse the effects.

LD and Weight Management/Obesity and Nutrition

Annual health checks are an opportunity for holistic review of a person’s health, lifestyle, medication and interrelated risks to health and wellbeing.

Overweight and obesity are major health risk factors in people with LD. They are high risk factors for non- communicable diseases include cardiovascular problems – mainly heart disease and stroke, type 2 diabetes, hypertension, musculoskeletal disorders, especially osteoarthritis and numerous cancers.

For adults, a body mass index (BMI) in the range 25 – 29.9 represents being overweight and 30 or greater is obese.

For children and young people under 18 years, BMI needs to be compared against a reference population of the same age and gender. The parents may be able to bring the redbook (Personal Child Health Record) which will contain the growth charts specifically for children which was given parents in most areas of England just before or after the birth of their child. In 2016 the online version was launched www.eredbook.org.uk

There are special reference charts for children and young people with Down syndrome – click here

  • Chronic constipation is a frequent problem for people with Learning Disabilities and this can distort assessment of weight.
  • BMI is not always an appropriate measure for people with atypical body shape.
  • Challenges in measuring height and weight accurately for some individuals.

  • Seated scales.
  • Measuring height with a tape measure.
  • Measuring height with the person lying down.
  • Measuring fatness by grasping a fold of skin and subcutaneous fat and measuring it using calipers.
  • Measuring the waist circumference.

  • Increased risk: men≥ 94cm, women ≥ 80cm
  • Greatly increased: men ≥ 102cm, women ≥ 88cm.

Setting a weight loss target may be an acceptable alternative to measuring a change in BMI for adults (not for children, unless clinically advised to do so).

  • Supporters’ lack of knowledge about buying and cooking healthy food – there is a need for training and good information for families and paid staff.
  • Lack of time – this often leads to the frequent use of ready meals. Shopping for, and preparing, healthy meals can be time-consuming.
  • The use of food and drinks as a reward or means of control.
  • Over-reliance on unhealthy activities, for example driving to a café or pub.
  • Supporters making unhealthy choices themselves – staff need to be encouraged to become healthy role models.
  • Limited staffing can make it difficult to attend exercise classes or take part in health activities.
  • Lack of understanding of the principles of choice and control.

Intervention such as multicomponent programmes (physical activity, diet and motivation) for overweight and obesity in adults with Learning Disabilities have achieved significant reduction in weight and diastolic blood pressure over time. Photo-assisted 3-day food records may provide better estimates of energy intake in adolescents with LD.

In relation to weight management there might be actions for GPs and other clinicians, the individual and their supporters. Possible examples are:

  • Setting a weight loss target.
  • Review and possibly change medication that affects weight.
  • Alter nutrition where this is assisted by gastrostomy.
  • Review management of diabetes.

  • Eating more healthily.
  • Taking more exercise and avoid being sedentary.
  • Monitor the weight loss.

  • Helping to motivate the individual to eat more healthily and take more exercise.
  • Helping the individual to plan and cook more healthy meals.
  • Reduce sedentary activities.
  • Supporting the individual to be more active.
  •  Having a role in implementing any best interests decisions about diet and physical activity.
  • Monitor weight loss.

Obesity and weight management: making reasonable adjustments

Public Health England

This guidance is for public health staff commissioning or running weight management services and other mainstream health professionals working to support people to lose weight. It advises about specific aspects of weight management for people with Learning Disabilities. It includes useful things to consider when treating a person with Learning Disabilities and insights into their experiences of healthcare.

Older People with Learning Disabilities

Overall, people with Learning Disabilities share the same age related physical and psychological changes as other older people. With some of these changes come age related health risks and it is important that all older people have access to high quality public health and medical services. 

People with Learning Disabilities are 2.5 times more likely to have health problems than other people but are often poorly served and discriminated by health services (Department of Health 2001; Emerson and Baines 2010; Mencap 2012). Because of their earlier life experiences adults with Learning Disabilities embark on the ageing process from a position of vulnerability rather than strength as they are often already in poor health (Bigby 2004, 2010). 

As a result of unhealthy lifestyles throughout their lives, older people with Learning Disabilities are more likely to experience lower levels of fitness, unhealthy diets, and be less mobile leading to greater risk of obesity and age related diseases such as diabetes, hypertension, heart disease, stroke, arthritis and respiratory disease (Emerson and Baines 2010; Royal College of Nursing 2011). 

Research shows that psychiatric conditions increase with older age though it is less likely to be treated (ELSA 2002). Older people with Learning Disabilities have a higher risk of psychiatric disorder than their younger peers, which is two to four times more common than for other older people (Bigby 2004, 2010 and Mental Health Foundation accessed 2012).

 

Person-centred future planning

Social Care Institute for Excellence (SCIE) and NICE
A quick guide for practitioners supporting people growing older with learning disabilities which covers:

  • Person-centered planning for now
  • Planning for the future: core principles
  • Creating a future plan
  • Future housing

 

Supporting older people with Learning Disabilities

British Insitute of Learning Disabilities (BILD) and National Development Team for Inclusion (NDTI)

This toolkit has been produced by BILD in partnership with NDTi. It is part of the BILD Ageing Well project that aims to promote a better understanding of the lives and needs of older people with a Learning Disability.

Disability Care Provider Quality Concern? Who do you report it to?

If GPs or other healthcare staff are visiting Disabilities Care Providers (Nursing Homes, Residential Homes or Supported Living for those with learning disabilities, mental health conditions or long term physical disabilities) and have a quality concern, they can report their concern in two ways:

The Disabilities Quality Assurance team will then review the quality of the service people with disabilities get from our local support providers*.  

Alongside feedback from Health professionals the Disabilities QA Team also utilises the following approaches, to give a holistic overview of a persons care:

  • Quality Compass – this is a survey capturing the views of an individual's circle of support. The survey asks family members, support workers, health professionals and many other people how they feel about the care being received by someone they know.
  • User-led organisations - these organisations are run by people who receive services themselves. 'Experts by Experience' use their own understanding of what it is like to receive support to assess the quality of a provider. The quality checks by the user-led organisations also provide a fantastic platform for capturing the voice of the service users. Experts by Experience combine this information to point out things that are good and areas that need improving.
  • Quality Review visits - the team's Quality Review Officers visit service providers and carry out full reviews into whether the provider is delivering a high standard of care and fulfilling their contractual obligations. Following their visits,  the Quality Review Officer will develop an action plan with time-scales to address any issues found during the visit. The objective is to provide guidance and to realise best practice wherever possible.  Where there are concerns about healthcare and the Review Officer feels it would be beneficial to involve healthcare professionals they will make contact with Practice Managers on a case by case basis.  Please can practice managers highlight emails from disabilityquality@gloucestershire.gov.uk to healthcare professionals in the surgery as they deem appropriate.

* The care and support needs to be funded by Gloucestershire social care or health.  Where the funding for the placement is from another local authority you will need to contact that authority as they retain the responsibility for “regularly assuring themselves of the safety and effectiveness of commissioned services” (Care Act Statutory Guidance, Section 14.9). In addition to this, if you feel a person with care & support needs is experiencing abuse or neglect within Gloucestershire (whether funded by Gloucestershire or not), you will need to raise a Safeguarding concern via the Adult Helpdesk on 01452 426868.

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