The past 30 years have seen a massive change in the way people with learning disabilities are cared for. A shift from the medical model of care to the social model has taken people out of hospital-style institutions into care in community settings.
But while most would agree that this has led to an improvement in care, it has not solved all the issues. In March a report by the Joint Committee on Human Rights concluded we still live in a society that ‘dehumanises’ people with learning disabilities, as we have done for centuries.
But it is not just the clients who experience it, says Helen Tinney, a specialist community nurse manager at Newham PCT in London. ‘If you are a learning disability nurse, you also feel the effects of the discrimination. It is as if you are treated as badly as your client; your voice is not heard either.’
But why is this client group so devalued by society and by health service providers?
Ann Gibbins, a senior nurse manager with the specialist learning disability service at Ash Green Hospital in Chesterfield, says it is primarily a lack of understanding. ‘People think they pose a risk. It is ignorance because they don’t know and have not had the opportunity to interact with people with learning disabilities to find out they are something different.’
To some extent, this also applies to health professionals, too. People with learning disabilities have very specialised needs, says Ms Gibbins, and as 80% have communication problems they can often present in ways that require time and patience to understand.
‘The health service is target-driven and people with learning disabilities need to be dealt with as individuals, going at their rate. That is why the health service falls down.’
The Joint Committee on Human Rights is calling on the government to consider its recommendations when it redrafts its consultation document Valuing People Now. The committee’s report is the latest in a series of documents to throw the spotlight on what is wrong with the way people with learning disabilities are treated across public services.
The Healthcare Commission’s audit of specialist inpatient services for people with learning disabilities in England came out in December. It said huge changes were needed to bring services up to a 21st-century standard. However, this only looked at services used by around 4,000 people.
The other 165,000 people with learning disabilities in England live with relatives, or in care homes that fall under the Commission for Social Care Inspection. Nurses mostly interact with these clients as part of multidisciplinary community teams.
All people with a learning disability were included in Mencap’s Death by Indifference report, published last March. Focusing on the neglect and premature deaths of six individuals, it made the case that people with learning disabilities are seen as a low priority by all healthcare organisations and that most health professionals understand very little about this area of care.
The Mencap report led to an independent inquiry into access to healthcare for people with learning disabilities, led by Sir Jonathan Michael, former chief executive of Guy’s and St Thomas’ NHS Foundation Trust. Panel member and RCN nursing adviser on learning disabilities Annie Norman expects recommendations to be announced in June. ‘This is a really hot area at the moment and a great deal more needs to be done in mainstream health services,’ she says.
One area likely to be singled out is diagnostic overshadowing. Here, assumptions are made that a symptom of a physical or mental health condition is exclusively to do with a person’s learning disability. This can often lead to people not being treated. Both doctors and nurses are guilty of it, says Dr Afia Ai, a specialist registrar in psychiatry of intellectual disability at University College London.
Through her work at Hackney Learning Disability Service, she sees chronic diseases and mental health problems being ignored. This is despite the evidence that people with learning disabilities are more likely to have such conditions as epilepsy or psychiatric problems than others.
‘Medical schools and nursing schools have a responsibility to train and expose [students] to people with learning disabilities at an earlier stage. That is what changes people’s values and opinions and that has a bearing on how they deal with people in the future,’ says Dr Ai.
The RCN has two guides for general nurses – Meeting the Health Needs of People with Learning Disabilities and Mental Health Nursing of Adults with Learning Disabilities. Both documents outline health needs, services and UK policies, as well as detailing how to assess mental health problems and what might be normal behaviour in a person with a learning disability.
While training for general health staff could do a lot more to raise awareness of people with learning disabilities, standards of training for learning disability nursing itself are of a high standard, according to Malcolm Richardson, associate subject group leader, nursing and midwifery at Sheffield Hallam University. There, nursing students do a joint social work qualification and must work alongside people with learning disabilities during their training.
‘Overall, the training is excellent. Adult nurses tend to want to be “a nurse” but nurses for people with learning disabilities want to work with disabled people and are more likely to have a positive attitude when they start.’
Mr Richardson thinks nursing practice is more evidence-based and clinically robust than in the past, and that students are now better able to explain what they do and challenge practice.
That can only be a good thing, he says, as often it is learning disability nurses who identify things that have gone wrong.
Ms Tinney sees such work as the core of learning disability nursing. She cites an example where a man with learning disabilities had a spiral fracture of the humerus that would not mend. He was refused surgery because of ‘clinical risks’ for 18 months. This was challenged by a learning disability nurse. ‘Without that focused attention on a specific problem this man would have been walking around with a floppy arm that was useless to him,’ she says. ‘Now, he has got a functioning arm.’
Ms Tinney recognises that one of the key skills of a learning disability nurse is to be broad-minded in the way you apply your knowledge and skills. She is currently overseeing a Healthy Lifestyles pilot project where people with learning disabilities who are classed as obese are supported in losing weight. Results so far show significant reductions in clients’ BMI – some going from 79 to 30 – and 30 people have been through the door since they began in 2005.
‘We want to progress to annual health checks, plug people in to leisure services to increase their fitness levels and talk to care providers to encourage healthy eating for their clients.’
But it is the vital, everyday improvements clients achieve that gives learning disability nurses a real buzz. ‘Seeing someone get on with their daily life, who would not be able to without that support being there – that is what I get out of it,’ says Mr Richardson.
Clearly, the role of the learning disability nurse is crucial. But Ms Norman sounds a warning over the future possibility of generic pre-registration nurse training instead of the current branch system, as mooted in a recent consultation by the NMC.
‘Learning disability nurses have some of the most fantastic clinical skills I’ve come across. They have a lot of concerns about the consultation and how that is going to pan out. I feel they need to retain these specialist skills in whatever way. If [training is] not there, their skills will be diluted and the most vulnerable people in our society are going to get less of a good service.’