Recent years have seen a series of high profile reports criticising the NHS for offering inadequate healthcare to patients with learning disabilities.
The most hard-hitting was Mencap’s 2007 report, Death By Indifference, which explored why six people with learning disabilities died as a result of receiving inadequate healthcare, due at least in part to their disability.
Perhaps it’s because we have such high expectations of the NHS that we feel so disappointed when it doesn’t live up to those standards. Thankfully, there are increasing signs that healthcare staff now recognise that people with learning disabilities don’t always receive good enough healthcare and want to tackle the problem.
A Mencap survey released in June revealed that almost half of all doctors said they had personally seen a patient with a learning disability being treated neglectfully or without dignity, while even more agreed they needed better guidance on how to cater to the needs of such patients.
The best guidance always comes from those with direct experience – in this case, people with learning disabilities themselves, and their families and carers. Frontline healthcare staff need (and want) to learn more about learning disability, and understand that just because a person isn’t communicating verbally, it doesn’t mean that they aren’t in pain or distress, or can’t understand what is happening to them. We in the social care sector also need to work more with the NHS towards the better, fairer service we all want.
There is evidence that this dialogue is starting to happen, and that new and positive partnerships between the NHS and the social care sector are being formed. For example, earlier this year, United Response was approached by Bristol Medical School, who asked us to deliver specialist training to future doctors in how to work and communicate better with people with learning disabilities. Often it is inability to access such training that causes problems in the first place.
We asked two people United Response supports to be our “experts by experience”. We then helped them develop and deliver two interactive training sessions directly to 230 second year medical students, as part of Bristol’s “3D week” (disability, disadvantage and diversity). Students attend a range of seminars, many run by lecturers with impairments or local disability groups.
Martin Bunton and Debbie White, both supported by United Response, spoke to students about their experiences of hospital care and how doctors can communicate better with patients with learning disabilities. They urged the students to use simpler language, always make the effort to explain what they are doing and avoid making assumptions about patients based on their ability to speak verbally. “I thought it went really well,” Martin said afterwards, “I hope there will be more doctors who will explain everything they do”. The sessions were fully interactive, with students and facilitators taking part and asking questions.
Dr Joanne Brooks, senior clinical lecturer and the consultant facilitating 3D Week, said, “The session with people supported by United Response has empowered students to recognise what a learning disability is, and gave Martin and Debbie an active voice in telling students how their needs should be met. I’ll look forward to working with United Response to further develop these sessions.” Jon Olds, a student, said, “The learning disability session was one of the week’s most valuable seminars. Listening to Martin and Debbie talk about their experiences raised a lot of issues that I hadn’t thought of before.”
We hope that we will see more and more forward-thinking efforts like this in the coming years. After all, offering the same quality healthcare to all is not only morally right, it’s a legal obligation. The Disability Discrimination Act requires that the NHS, like other public bodies, should make ‘reasonable adjustments’ to meet the needs of a disabled person.
This adjustment doesn’t necessarily need to be difficult - even simple changes can dramatically improve the experience of patient and GP alike. One person we support found the environment of a GP’s surgery so confusing and stressful that she was reluctant to seek help when ill. The GP made the reasonable adjustment of meeting his patient outdoors, where she felt calmer.
At other times, a reasonable adjustment can be more difficult. If someone has a complicated medical condition and is unable to describe their symptoms verbally, there is no doubt that this poses an extra challenge to the NHS. However, this is exactly when their family or their carers can help, by using their own knowledge of the person and how they communicate to assist healthcare staff.
It’s vital that we get better at sharing best practice with each other, learning from our successes and our failures. This will become even more important as GPs take a more direct role in commissioning health services, helping to find support for people with learning disabilities on a day to day basis, and not just when they become seriously unwell.
It’s going to be difficult at times, but we have to get it right if we are to end the current inequities in our healthcare system. Only then will the NHS fully live up to its founding principle to “meet the needs of everyone”, something we all want.
Su Sayer is chief executive of United Response. Dr Joanna Brooks is senior clinical lecturer at Bristol Medical School