Interview with Carys Banks by Lorna Rouse
Carys Banks is a doctoral student at the University of Bath. Her research ethnographically explores how government policy is interpreted and incorporated into social care support for adults with learning disabilities in the UK. Carys conducted research exploring healthcare provision for adults with learning disabilities whilst working at the Cambridge Intellectual and Developmental Disabilities Research Group.
Broadly speaking, we started the project in response to evidence over the last five or six years indicating that men and women with learning disabilities experience inequalities when accessing healthcare in the NHS, particularly in secondary healthcare. The most significant piece of literature on the subject was the MENCAP report 'Death by lndifference' published in 2008. lt told the story of six adults with learning disabilities all of whom died whilst under NHS care. MENCAP claimed the deaths were indicative of institutional discrimination against people with learning disabilities. Although there had previously been quite a bit of evidence regarding the problems facing people with learning disabilities when accessing health services this document really raised the issue's profile because it included hard hitting, emotional details of the individual's personal stories. ln response the government asked for an independent review of mainly secondary and some primary care which was undertaken by Sir Jonathan Michael the former Chief Executive of Guy's and St Thomas's. His findings showed that there is a lot of poor practice with regard to the care and treatment of people with learning disabilities within NHS. According his report this is not necessarily discrimination rather a lack of understanding about how to care for and treat people with learning disabilities along with some poor practice. The report made ten recommendations for improving services including setting up a health observatory and placing learning disability staff liaison nurses in every hospital. Although 'Death by lndifference' and the Michael's report supported one another they actually expressed different opinions over whether the problems were due to discrimination or poor practise so we really wanted to find out exactly what the problems are. Cambridgeshire Learning Disability Partnership (LDP) decided to collaborate with the Cambridge lntellectual and Developmental Disability Research Group who were carrying out a series of interviews with various people over Cambridge involved in health and social care provision for adults with learning disabilities combining it with their internal evaluation.
What kinds of difficulties do people with intellestual disabilities have in accessing healthcare?
There's a large range of problems. The important thing to remember is that because they are such a heterogeneous population some people might not experience any problems while others may experience a mixture of different kinds of difficulties. The main problem does not surround physical access as much as it concerns having someone to recognise individual health needs because often everything has to be done by proxy. Although there are a huge spectrum of individual needs I think that even people who are classed as having mild or moderate learning disabilities may need significant amounts of help to identify an issue or to articulate what's going on so that's the first hurdle.
So communication is a key problem?
Yes there is a communication issue and that transcends through to the point of service in other words where you access your GP or your secondary care acute unit. Somebody may need to describe the problem on behalf of a patient with a learning disability and some people have complex social care and healthcare needs. One of the things I've found during the project and also from my current experience as a support worker is that there can be many different people involved in one person's care and support. For example there might be agency workers in addition to five or six permanent staff so each person may be supported by at least two different people every day. ln order to maintain and monitor their health there has to be good communication between staff in a supported living house and there may be disparities in individual staff member's knowledge or outlook on health issues. On top of that you also have relatives or supportive others outside of the house who may or may not want to play a role in monitoring that person's health. A support worker who wants to take omeone to see their GP for instance might have to ask their family first but may find they can only do this whilst at work and can only get hold of the family member at certain times, which can really slow up the process. And these are just the proximal relationships. ln addition, people with learning disabilities already known to the appropriate services can gain access to health treatment through the LDP for health problems perceived to be specifically learning disability related, such as epilepsy. There are a lot of different hands involved in the same person's care and support and just that in itself makes the whole thing very complicated.
What strategies have been suggested to help overcome these problems?
Jonathan Michael's report suggested that everyone should have a health action plan and it is now a legal requirement that people with learning disabilities who are in residential supported living have plans that detail various aspects of their health status. The aim of a plan is to keep a good record of a person's history including their needs which can perhaps be taken to the GP or a hospital. Most people now have a patient passport including things they do and don't like and things they have to have and the idea is these can be taken to a hospital say, and can act as a communication device. The main effort focused on adhering to the Disability Discrimination Act's 'reasonable adjustments' to ensure there are enough health professionals taking the time to find out what those reasonable adjustments are for the individual accessing and receiving treatment. There's also the health observatory and the LD liaison nurses.
What challenges are faced by healthcare professionals when trying to make the reasonable adiustments requlred
by the Disability Discrimination Act?
ln primary care, you have a ten minute slot as a GP and quite often it might take a few minutes for a person with a learning disability to become comfortable within the consultation. GPs need the skills to make the patient feel comfortable in order to get all the necessary information. Essentially it's about good people skills, good communication as well as not feeling intimidated or uncomfortable. During the project a few of the GPs I interviewed said they didn't even know what a learning disability was whereas others were actively interested and said they knew all their patients with learning disabilities and had worked out an 'ad hoc' way of successfully managing consultations rather than using formal processes such as reasonable adjustments. Having the time to elicit information is important in a primary care setting as is listening to support workers. ln hospital settings it's very different and I personally think the main problem is that significant amounts of time need to be spent with this group of people and that is just not possible in a busy hospital environment.
What was your general methodology?
The bulk of the research comprised of a qualitative study, essentially interviews, which I transcribed by hand as people were speaking to me. We divided the interviewees into six groups and then devised a set of questions for each group so that we had a broad format which I carried out in the interview. I then wrote up the notes and carried out a thematic analysis. This involves reading through the interviews and drawing the emerging themes together so it was all quite exploratory. We also used a very small survey to count the numbers of people with a learning disability admitted to ten wards at Addenbrooke's Hospital in Cambridge over a period of seven weeks. The wards were selected on the basis that they were likely to include learning disability patients.
Did your background in anthropologly influence how you approached the study?
Not as much as I would have liked but in some ways it did. For example, I'm not a great advocate of using software packages to code interviews. I think that influenced the approach l took which was not to assume anything. When speaking to people, whoever they are and whatever view I might have, I tried to understand things from their own personal world view. I also kept context in mind because all the reports we looked at are written in terms of public policy and from a particular perspective. I think it's important to acknowledge that when you are addressing issues that take place in everyday life.
Can you expand on that?
Yes the reports have their own agenda or value system which may not necessarily tie in with the value system of the people I was speaking to. That doesn't necessarily mean those people are doing something wrong but they might conceptualise it as the way they want to live their lives or the way things should be done. lt is not about being objective; it's more about trying to acknowledge that different values exist in different situations.
Were there any specific challenges involved in using your methods when interviewing different groups of people?
Yes I think we interviewed a few too many people. lt would have been interesting to have spent more time with less people in order to get richer accounts. Obviously that would produce a different kind of knowledge. ln the beginning I would spend nearly two hours with people but originally I was instructed to do it in twenty minutes! So there is an epistemological issue, depending on what you want to get out of the study. A certain kind of knowledge was produced from our approach but it would have been different if I had spoken to less people for longer. We also only conducted interviews which are very interesting if you want to find out how people articulate and understand things themselves but if you also want to understand what's happening in practice I think you need to combine interviews with observations. Then you can obtain comparisons between what people do and what they say they do. That would be the ideal combination. One of the frustrations in conducting a study with only interviews was that I felt that a lot of people, especially those in the various services, were just regurgitating policy rhetoric about how they provide services. On the odd occasion you might get a glimpse of a different type of behaviour but it's very hard to see and less obvious. lf you ask a specific question like 'How do you manage a person with learning disabilities who comes into your surgery?' No one's going to say 'Oh I ignore them!' for instance. I'm not saying they do ignore them but generally we articulate how we want to act rather than how we do act. So that was one of the challenges. The skill is to draw that from the data.
ln general most people were really keen to talk to us. Most families were very keen to talk and we found that hospitals were very willing to work with us too. They didn't take a defensive stance. More often their attitude was like an acknowledgement that they don't do enough and that services are poor for this group of people. There was, however, a sense that they were carrying out poor practice and felt that they shouldn't but this was perhaps a result of the medics' portrayal of bad hospital care.
What were the main findings from your research?
Our main findings regarded the importance of the proximal relations and that social care support is really important because even if you don't necessarily have a great GP or a good experience in hospital if you have somebody to support you then you have a much better chance. lt might be unrealistic to suggest that you can reform the NHS services in such a way that will incorporate all the needs of all the people especially those who have complex social care needs. I don't mean that to sound defeatist but there are certain things that some services can't do and unfortunately because the NHS can't do these things they've been branded as discriminatory. Essentially there will be lots of people with learning disabilities who don't experience any inequalities when accessing healthcare services. I really believe quite strongly that a lot of the reason for that is because of the relationships they have in their general lives in that they are very strongly supported by people who are able to help them access the particular service they need. The key point is that while current focus is on improving mainstream NHS services I think the focus should be on the kind of support from social services or the familial or relational support that a person has in their everyday life.
No. GPs and health services either recognised they hadn't done enough or professed how much they did do. So they saw it not from an all round services perspective but as providers of a service. Families saw it more as a personal experience of accessing services and generally if people didn't have a health problem they didn't see any issue.
Do you think that these findings will help professionals to improve healthcare for people with intellectual disabilities?
So it's difficult to get from the academic, to the policy, to the practical?
Yes, from my perspective research is done to help improve things and if it's just going to be from an ivory tower then it's not achieving its aim.
ls there any more to be learnt about healthcare for adults with intellectual disabilities?
Yes, definitely! I think it would be brilliant to do a series of really indepth case studies on a smaller group of people who have significant health problems or spent time in hospital and experienced an episode where things have gone wrong in order to try and determine what really happens. lt would be interesting to see whether these were instances of perceived discrimination or instead are related to other factors. I think the problem is that it's easy to put all the blame on an institution like the NHS as if it's some kind of bogeyman. These problems are so complex and difficult to deal with that it's just not as simple as one institution or organisation getting it wrong. A more in-depth study might help us learn more about that.
That's been really interestlng. Thank you very much.
This interview originally appeared in News & Views August 2011.