'When I say "hello, John, you have a learning disability, and we’d like to share this information when we write to the hospital or to the screening programme" I’m not doing very much but I’m telling my patient that "I get it",' says Dr Guy Bradley-Smith.
Dr Bradley-Smith is New Devon CCG's clinical commissioning lead for learning disability and honorary clinical lecturer at University of Exeter Medical School. He is one of a number of GPs working to improve the experience – and outcomes – for patients with learning disabilities, who are as a population extremely prone to health problems and co-morbidities.
Learning disability charity Mencap has been campaigning to improve healthcare in this area since its ‘Death by indifference’ report in 2007, which led to the DH commissioning a two-year confidential inquiry from the University of Bristol.
The inquiry report, published in March 2013, made a number of recommendations including clear identification of people with learning disabilities on the NHS central registration and all healthcare record systems, and the standardisation of annual health checks with a clear pathway to health action plans.
Alongside this, Mencap has developed its own toolkit for GPs, based on its three-year ‘Getting it Right from the Start’ project (see box below).
Named and trained
One of the major recommendations that Dr Bradley-Smith and others make is for a named person at a practice – usually someone from the admin or nursing team – to be the ‘front of house’ contact.
In some practices this nurse will also do the ‘weights and measures’ element of the annual health check, but the key point is that this is the person whom patients and carers know – who makes an unfamiliar environment less threatening to patients who are not very good with new places, and who will also build up, over time, a relationship with those patients.
‘I knew something had changed the day when I was picking up my post and I heard a mid-20s patient with learning disabilities come in and ask for our named nurse by name,’ says Dr Bradley-Smith.
However, this doesn’t mean that this person becomes the only one in the practice who receives training on disability issues – quite the contrary.
‘It’s important that all members of the practice know about this group of patients and how to deal with them,’ says Dr Tom Howseman, clinical lead for the learning disability service in Nene and Corby CCG and chair of the RCGP Intellectual Disabilities Special Interest Group.
Information and accommodation
Easy-read information is a big issue for people with learning disabilities. Ensuring clinicians can access this from their desktop can make a big difference.
For the practice, though, information about the patient is equally important – some form of tracking and registering that a patient will need this information, along with other adjustments.
‘We have a flash-up for people on the learning disability register which says something along the lines of "please take note and also look at our protocol",’ says Dr Hoowesman. ‘It’s not a tricky protocol, it’s along the lines of just making sure that they recognise this patient may have difficulties with communication. It’s likely that the patient will have someone with them who needs to be kept in the loop, and they may also be more jumpy or nervous than other patients.’
Many practices recommend scheduling longer appointments, and/or appointments at quieter times.
‘Things like using a needle can take time, and appropriate communication,’ points out Dr Jill Rasmussen, clinical lead for learning disability at NHS East Surrey CCG. ‘Patients may need other assistance as well – they often won’t be able to read the doctors’ names flashing up. People with genetic learning disabilities are often smaller than average, so things like the height of an examination couch need to be considered.’
Annual health checks
‘Once the patient is seeing a clinician, there are other things to consider,’ says Dr Howseman. ‘GPs need to be aware of the predispositions to particular conditions. I have an annual health check training kit that we’ve been delivering for years: it goes through the specifics, and what to look at, and what considerations they should make of the medical predispositions.’
People with Down’s syndrome, for instance, are particularly prone to Alzheimer’s and to leukaemia while overall, people with learning disabilities are more prone to respiratory and/or cardiovascular conditions.
‘You can’t have usual "how are you feeling" conversation so you need to look – and it may be that apparently simple things are causing discomfort,’ Dr Rasmussen explains. ‘Feet can be a big problem. People aren’t washing adequately between toes or getting their toenails cut; care staff say they aren’t allowed to cut toenails. However, they can file nails. You have to keep thinking about alternatives.’
‘There are a fair number of legal statutes in place which make it possible to ‘discriminate’ in favour of this group and give them gold standard service,’ Dr Howseman concludes. ‘This is a group of patients who deserve our help and don’t make unreasonable demands – there is a pretty good chance there will be a good reason for seeing them.’
|Resources for practices|
Mencap's GP toolkit has a number of videos with advice on:
Mencap has also produced a range of guides and handouts for GPs, which include a template appointment letter, guides for patients explaining how to take a single medication or multiple medication and a template 'how to complain' letter.