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