Not being able to tell someone what is wrong leads to care staff making flawed assumptions, but guidance on health and behavioural changes to look out for is available.
People with learning disabilities (LD) face many health inequalities.
They’re 54 times more likely to die before the age of 50 than the general population, partly because they receive inadequate care. This stems from professionals not knowing how to support or communicate with them, and it’s an issue across the board from primary to secondary care. The result is unnecessary or prolonged hospital stays - and in some cases death.
"The single most important challenge faced by people with learning disabilities is communication. [Early prevention] can be as simple as observing how someone is walking when you take them to the cinema."
The NHS outcomes framework lists the reduction of mortality rates for people with learning disabilities as a priority, but to date little action has been taken systematically to address current rates. That is why, with the help of our nurses and staff, we at social care organisation Turning Point developed a health toolkit in the form of easy-to-follow guidance available though our website.
Launched last year, this is now being adopted across our organisation and by other social care providers including Dimensions, Brandon Trust and Affinity Trust who have added it to their training programmes.
Spotting the signs
The toolkit is designed to help workers get better at spotting the signs and understanding the subtle changes that indicate a health problem. This is key as early detection can either prevent or cure many issues.
The guidance tells staff what to look out for, therefore avoiding unnecessary hospital admissions. The advice ranges from helping staff recognise what is a normal weight to common symptoms of conditions such as urinary tract infections and bunions. It can be as simple as observing how someone is walking when you take them to the cinema. The toolkit empowers staff to challenge GPs and hospital staff from a position of knowledge.
The single most important challenge faced by people with learning disabilities is communication. Not being able to tell someone what is wrong verbally is not only frustrating. It also frequently leads to care staff making the wrong assumptions.
'Pain going unrecognised'
I've come across cases where people with learning disabilities haven't received pain management because they can't tell doctors and nurses they're in discomfort. Therefore the pain goes unrecognised which can lead to an increase in challenging behaviour. Or it's assumed they're being awkward, for example when a nurse is taking their blood pressure. But it's really that the individual doesn't know what's expected of them.
Many professionals also still do not understand who can and should make decisions on behalf of someone with a learning disability. Despite the Mental Capacity Act, I've found that support staff are still asked to sign consent forms in hospital. This is why cases have arisen with do-not-resuscitate orders (DNRs) being put in place by hospitals without the proper consent. Just because someone has Down's syndrome doesn't mean they should have a DNR order. They should have a choice and a right to a quality of life like anyone else.
As a support worker, you are often an advocate for people with learning disabilities, their 'voice.' So you need to know when to trigger a GP visit and then the questions to ask the doctor. It’s about telling the GP they’re concerned because the person’s not sleeping as well as usual, or being persistent if symptoms are dismissed too readily.
We work with many doctors who are interested in the health needs of people who have learning disabilities. However this isn’t consistent, and pressures on GPs mean that sometimes appointments are rushed.
There’s a case I know of where a woman was showing behaviour changes like lying on the floor in the foetal position. Yet there appeared to be no major physical changes. Repeat visits to the GP though resulted in a diagnosis of a sluggish bowel.
Now she’s much happier because she can leave the house and so maintain family contact. This is a positive example of how looking out for signs can lead to effective treatment.
This toolkit aims to help early intervention and ensure people with learning disabilities are enabled to lead a full and healthy life. Health is not something we should just think about when someone is ill. It should be about everyday observations which can tell us so much and can transform someone's quality of life.