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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.
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:
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.
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.
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.
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.
National Development Team for Inclusion (2016)
This guideline can help staff to identify the likely cause of constipation and the possible solutions.
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.
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
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:
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.
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'.
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.
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.
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.
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.
This pain profile and assessment of pain easy read leaflet for patients includes sections on;
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:
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.
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:
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
People with Learning Disabilities have an increased risk of substance misuse if they:
Other risk factors for substance misuse include:
Substance misuse has negative and social effects on people with Learning Disabilities. These have been shown to include:
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
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).
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:
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).
Social Care Institute for Excellence (SCIE) and NICE
A quick guide for practitioners supporting people growing older with learning disabilities which covers:
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.
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:
* 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.