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Practice comment

Do you provide equal care to people with learning disabilities?


Nurses need to adjust their care to enable people with learning disabilities to access mainstream services. Ignorance about this client group is unacceptable, says Irene Tuffrey-Wijne

Have you ever looked after a patient who had learning disabilities? If your answer is no, chances are that (a) you haven’t been nursing for more than a couple of months; (b) you haven’t realised that your patient had learning disabilities; (c) your service is failing spectacularly at providing equal access to all patients, or (d)… can’t think of (d). Maternity care? People with learning disabilities have babies, too.

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When I started nursing in the 1980s, many people with learning disabilities were still living and dying in institutions, and only the specialist nurses working there needed to know about them. Those days, thankfully, are gone. People with learning disabilities now live in our own neighbourhoods. Their physical and mental health care is the responsibility of mainstream services.

Having a learning disability does not miraculously protect you from getting ill or from dying – in fact, this group is at higher risk of developing a whole range of physical and mental health problems. They are living longer, and are therefore more likely to need healthcare. People with learning disabilities make up 2.5% of the population. If you haven’t seen anyone with learning disabilities coming through your doors, you should be wondering why not, and how your service can reach out to this group.

‘You cannot choose to exclude patients just because you do not know how to adjust your care’

The news in recent years has not been particularly cheerful. The poor healthcare of people with learning disabilities has been well documented: studies have shown they often have undiagnosed health problems, sometimes serious or even life threatening. An Independent Inquiry into the healthcare of this group stated: “People with learning disabilities appear to receive less effective care than they are entitled to receive. There is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided” (Michael, 2008).

Doctors and nurses are not malicious, but they can be ignorant and even fearful. I have often met frustrated learning disability care staff whose clients were seriously ill. “We are not nurses,” they say. “We are not medically trained. I don’t know anything about cancer. I don’t know how to use a bedpan. I can’t stay with my client in hospital around the clock.”

When I teach palliative care professionals about supporting patients with learning disabilities, I find they are also at a loss. “I don’t know anything about learning disabilities,” they say. “How can I assess their pain? How can I make myself understood?” Nobody knows everything – but you know your specialty. You need to find out what you need to know about patients with learning disabilities, so they can benefit from your expertise.

You would not expect a patient who is a wheelchair user to climb the stairs: even if only 1% of your patients are physically disabled, you would provide a lift or a ramp.

Patients with learning disabilities also need adjustments. They need you to learn about communication, provide accessible information, give extra time, and include their families and carers as equal partners in care. These adjustments are not optional. You cannot choose to exclude 2.5% of your patient population simply because you do not know how to adjust your care to include them.

And guess what? Knowing how to support patients with learning disabilities will most probably benefit all your patients, including those who speak little English, or are confused or frightened. It will make you look at each patient as a true individual – and that can only be a good thing.

IRENE TUFFREY-WIJNE is senior research fellow, St George’s, University of London


Readers' comments (4)

  • I know of a learning disability client that was in hospital for a DVT, she was left unwashed and her pad was'nt changed for more than a day and a half! her pressure areas were also left unattended! when asked about this a staff member said "she wouldnt let me".
    Having qualified as a learning dis nurse over 20 years ago we had to do a general attachment, but the general trained students didnt have to do a learning dis attachment, maybe this is the way forward as we learnt about communication, and how to deal with behavioural issues, how to feed someone and basic care.

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  • Anon, I agree fully. I qualified as a RNLD almost 7 years ago and even then we didnt do alternative placements. We did fieldwork to gather information abouth the other 3 branches of nursing. How this benefits a general nurse I do not know. It is nice to see more speacialist nurses being employed in hospital settings ie Acute liason nurses, nurse specialists, however with the change of government and the radical impending cuts, will these be some of the positions to claw back deficits from?

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  • My mum worked in an institution for people with learning difficulties and frequently brought them home for tea, so I am lucky to have been socialising with people with learning difficulties from aged 11.I find that the majority of nurses are uncomfortable at understanding and making themselves understood by such patients, so try to avoid it if possible. Some doctors aren't much better. The sense of achievement when you are able to communicate is very rewarding. The skills gained are transferable to other patients where communication is difficult( elderly, deaf, mentally ill patients) People with learning difficulties deserve a far better deal from the health services than they receive at present. To offer them less than other patients is simply neglectful and unprofessional.

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  • I am a learning disability nurse and I qualified just over 7 years ago as last of Project 2000. The course may be slated by some but at least all nurses had to complete placements in all areas. adult, mental health, child nurses and midwives at nottingham had to complete 4weeks in LD settings in CFP, as I did in all of their branches. I gained valuable clinical skills, knowledge of child development and anti-natal and post natal care....all of which i need to know in my daily practice and in return other branches learnt people with a learning disability have the same rights as any one else in society, including fair access to health care and treatment. I have had personal encounters of shockingly appalling practice when supporting people to appointments or admissions in acute settings. It maybe more difficult to communicate with some people but you can guaruntee if someone has a communication deficit to the extent, you as an adult/MH/Child nurse/midwife can't use basic communication skills such as speaking slowly and clearly, giving one peice of information at a time and giving people a little longer to process and respond to questions, people will have support staff or family with them who can communicate for you (or ideally give you the skills to do it!)
    The disabilty discrimination act states that services should make 'reasonable adjustments' in making things accessible. Is booking someone in at A&E and letting them wait outside or go for a walk for an hour, as a busy wiating room in a recipe for disaster, unreasonable, or at any other setting??
    The NMC Code states that all patients should be treated with respect and dignity and have a right to treament without prejudice and discrimination. The last time I looked it wasn't followed by some small print of "...unless you have a learning disability.."

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