NICE has issued guidance on the care and support of older people with learning disabilities, which could be be used to push for better services. Margaret Lally discusses its recommendations
A guideline to help services address the needs of people with learning disabilities as they grow older was published by the National Institute for Health & Care Excellence earlier this year (NICE, 2018a).
While Care and Support of People Growing Older with Learning Disabilities is aimed primarily at health and social care commissioners, there is an easy-read version of it.
NICE guidelines contain evidence-based recommendations and, while these are not usually mandatory, organisations are expected to follow them.
The guidance discussed here was developed to assist services that do not know how to respond to the needs of people with learning disabilities as they grow older.
The guideline working group was made up mainly of people from health and social care, but there were also three experts by experience and two carers.
It considered a lot of evidence (see NICE, 2018b) before making its recommendations. However, there were numerous gaps in the evidence and the working group has recommended more research is done.
The experts by experience were supported to make a full contribution to writing the recommendations, drawing on their own experience of what worked (and did not) for them. This included having a day together, before each meeting, to work through the papers; this was facilitated by Paradigm, a learning disability training and development agency.
Based on rights
The underlying principle of the guideline is that people growing older with a learning disability have a right to the same access to care as everyone else and that care should be person centred and tailored to their needs.
The starting point is that providers must implement existing legislation and guidance, particularly NHS England’s Accessible Information Standard (2017) and the Equality Act 2010.
Providers must make reasonable adjustments for people with learning disabilities and ensure that they are communicated with in a format that meets their needs, such as easy read, videos, tapes or the use of dolls.
They should also talk to the person’s family and carers, if appropriate and with the person’s consent, to make sure they have a good understanding of the individual. If the person does not have a carer, it is recommended that they are supported to find an advocate.
Practitioners working in acute medicine may not be sufficiently familiar with the Mental Capacity Act 2005 (MCA) and assume that a person with a learning disability automatically lacks capacity. This can result in treatment been given without consent or, conversely, treatment being withheld.
Both situations can be extremely distressing for the individual and may also mean they do not get the right treatment.
The NICE guideline states that practitioners must understand the MCA; it should be assumed that a person with learning disability has the capacity to make decisions about their own treatment and they should be supported in making those decisions, unless an assessment demonstrates otherwise.
Overall, people with learning disabilities have poorer health than the general population.
They have a greater risk of mortality due to conditions associated with their learning disability – for example epilepsy and aspiration pneumonia. Some will have poor general health because they take insufficient exercise and have an inappropriate diet, which makes it harder for them to combat illness.
As people with learning disabilities start to grow older, they will develop conditions associated with ageing but probably sooner than most people. There is a higher prevalence of dementia in people who have Down’s syndrome and this is likely to occur at a much earlier age.
Services often do not accurately diagnose and respond to symptoms that people with a learning disability present with. Many people with learning disabilities, particularly those with limited speech, find it difficult to communicate what they are feeling and, if a doctor does not know the individual, they may find it hard to identify what is going on for them.
For instance, the symptoms of a condition such as dementia may be confused with those associated with the underlying learning disability. What is seen as challenging behaviour may be due to the individual being in pain or just finding it more difficult to hear what is being said. This is sometimes known as ‘diagnostic overshadowing’ and can led to unnecessary suffering and even death.
Improving healthcare access
The NICE guideline therefore makes specific recommendations to improve access to healthcare and facilitate healthy ageing.
People with learning disabilities should be supported to have their annual GP health check, as well as the other checks available to the general population.
The annual check – which should include asking whether the person has had sight, hearing and dental tests – can help promote a healthy lifestyle and identify underlying conditions. It should include giving information about other services and be followed up by an action plan that both responds to any conditions identified and supports the person to age well. Commissioners should identify and address any gap in services eg optometry.
Again, good communication is essential. Particularly where a doctor does not know a person with a learning disability well, the individual must be able to bring someone with them who knows them very well, and can help them to both explain how they are feeling and understand what interventions are being offered.
Practical support could also include:
- Providing longer appointment slots, explaining clearly what will happen beforehand and continue to explain throughout the appointment
- If a medical examination is involved, particularly an invasive one, explaining clearly beforehand what is involved and letting the person see the instruments or machines (eg for mammograms)
- Providing written information for both the person with the learning disability and their carer.
Other recommendations to improve access to health include providers using a ‘hospital’ or ‘health passport’, which provides key information about a person including how they like to be communicated with, their current health status and who needs to be consulted about their care.
The employment of a learning disability liaison nurse who works with hospital staff, the person and their supporters to facilitate communication is also recommended.
The guideline emphasises that, like everyone else, people with learning disabilities have the right to live fulfilling lives and achieve their aspirations.
It makes recommendations intended to ensure strengths-based and person-centred care planning. Care plans should identify what activities are important to individuals and how they will be supported to do them.
Emphasis should be placed on maintaining and nurturing relationships – whether they are with family and friends or more intimate ones with partners. Research highlights that strong social networks and relationships may be a factor in facilitating good health (particularly mental health) and resilience (Age UK, 2010). Evidence suggests that people with learning disabilities are often quite isolated, particularly as they get older when they are no longer able to take part in initiatives that are learning disability specific; they may also be excluded from provision for older people because of their learning disability.
The guideline recognises the importance of age-relevant facilities being available to people with learning disabilities. It recommends that local authorities develop and promote a wide range of accessible community services, including education, and physical and social activities, which reflect local people’s preferences and abilities.
Planning for the future
An important part of any care plan is future planning. Two-thirds of adults with learning disabilities live with their families – often until well into old age.
Consequently, many older people with learning disabilities are not known to health or social services and do not become known until there is a crisis in the family – often the illness or death of their parents.
The guideline recommends that planning for the future takes place as early as possible and suggests matters that should be considered, including financial arrangements. There should be a sensitive but realistic discussion about what will happen when the family can no longer provide care and, indeed, when the person with a learning disability wants to live elsewhere.
An early discussion of possible options makes it easier for everyone. However, this will only work if there are realistic options to offer. The guideline recommends that local authorities do more to promote positive housing solutions (as well as residential and nursing care) to meet changing needs, including shared living schemes, or adapting the family home to make it suitable for the person to continue living there.
It is also essential that the emotional and practical needs of carers are looked after through, for instance, easily accessible information and respite care.
NICE also makes recommendations on how best to care for a person with learning disability who is dying. These include providing timely, person-centred advice to the person and their carers about all potential care options, including hospice services, and making it possible for the person to die where they wish.
The final recommendations focus on ensuring practitioners have the skills and expertise needed to work with people with learning disabilities as they grow older. This means that, as well as understanding learning disability, practitioners should be aware of conditions associated with ageing.
Over the next year, NICE will promote the guideline, including developing quality standards and quick guides (which deal with specific topics). People with learning disabilities, their carers and advocates should use the guideline to push for better services.
Margaret Lally was the chair of the Care & Support of People with Learning Disabilities as they Grow Older guideline committee, and has a background in health and social care
National Institute of Health and Care Excellence (2018a) Care and Support of People Growing Older with Learning Disabilities. www.nice.org.uk/guidance/ng96
National Institute of Health and Care Excellence (2018b) Care and Support of People Growing Older with Learning Disabilities. Evidence. www.nice.org.uk/guidance/ng96/evidence
NHS England (2017) Accessible Information Standard. www.england.nhs.uk/ourwork/accessibleinfo/
Age UK (2010) Loneliness and Isolation Evidence Review. www.ageuk.org.uk/documents/en-gb/for-professionals/evidence_review_loneliness_and_isolation.pdf