Until recently, Emma’s kidney problems involved treatment daily and throughout the night, using a form of dialysis that takes place within the body.
The almost constant process severely restricted her quality of life and, after eight years, the dialysis was starting to lose its effectiveness. Emma, whose complex health needs also include a learning disability, began getting life-threatening bouts of peritonitis. Without alternative treatment, she would die within two weeks.
Emma’s consultant ruled out a transplant and the only option was a different treatment using an external dialyser. However, clinicians were concerned about infection if Emma touched an exposed dialysis line.
Emma’s support staff at care provider, Turning Point came up with a solution. They presented their health colleagues with a document describing the life Emma wanted, describing how she spends her time and her aspirations for the future. Turning Point staff said they could provide restraint, if needed, when the lines were exposed. They successfully argued that this was the least restrictive option, because there was a risk of death without new treatment.
After three days of specialist training to facilitate the new approach, Emma started the new dialysis three times a week.
The treatment has transformed Emma’s life. She now goes out for the day and belongs to a drama group. Better still, she has been on holiday to Kefalonia where, with the support of her consultant and care staff, she got dialysis at a local hospital. Emma may now be a potential candidate for a transplant.
Without the staff team advocating on Emma’s behalf, the outcome would have been very different. As Turning Point says, ‘Persistence and skilled advocacy, based on an in-depth knowledge of the individual and their wishes, can change a person’s life.’
Health outcomes for disabled people
Enabling Emma to get the very best from health services is a fundamental aspect of good support. Emma’s story features in one of the latest reports from VODG (Voluntary Organisations Disability Group), Tackling Health Inequalities.
The publication is based on an event we held on health outcomes for disabled people. It reflects the unique role of support providers in working alongside disabled people and their families in understanding how someone’s health needs fit into their life circumstances. It also sets out what social care providers believe can help or hinder their health treatment.
Tackling health inequalities is a key priority for VODG. Our aim is to enable our members to work together so the people they support make informed health and lifestyle choices and live healthier, more active and more fulfilled lives.
The report builds on VODG’s longstanding work in this area. It is a year, for example, since we renewed our focus on tackling health inequalities. Since that decision, which was taken during a network meeting of our chief executives, we have been sharing good practice developments among our members. We are also supporting the STOMP health campaign to stop the over-use of psychotropic medication to manage people’s behaviour and which re-launched the learning disability health charter, which now includes dealing with over-medication.
As a next step, we are focusing on dietary issues for people supported by VODG members, proposing to develop tools that enable providers to audit the nutritional value of what people eat and drink.
In 2016, for example, only 26% of adults were eating the recommended five portions of fruit and vegetables per day. But how many care providers know whether the people they support eat a healthy diet or drink enough?
These are among the questions raised in our health inequalities report. There are over 11 million people with a limiting long-term illness, impairment or disability in the UK. Disabled people seek more healthcare than people without a disability and have more unmet health needs. Yet health promotion rarely targets people with disabilities. Some studies indicate that disabled people are more likely to engage in health risk behaviours, such as smoking, poor diet and physical inactivity.
Men with a learning disability, for example, die 13 years sooner than people without learning disabilities and women with a learning disability die 20 years sooner. The recent inquest into the early and preventable death of Richard Handley, a 33-year-old man with learning disabilities, highlighted failures in his support from the agencies involved in his care.
In a separate case, an inquest found that the death of Anthony Dawson, a 64-year-old man with learning disabilities could have been avoided if he had received medical attention earlier.
Good practice in health for disabled people
According to registered managers and first-line managers whose views shape our new report, good practice in health for disabled people is localised, rather than consistent across the country. The kind of healthcare developments that providers say work well in some areas include Health Action Plans, the use of a hospital book or passport and enhanced GP services.
Tackling Health Inequalities lists care providers’ most common successes in ensuring good health outcomes for people supported. Among these are improved health monitoring and achieving health goals, collecting good health data and boosting participation in screening programmes. Training for staff or the people they support on a variety of health issues is another positive area, as is the launch of initiatives to promote healthy lifestyles, including information on diet, exercise or smoking reduction.
For example, adjustments to how NHS staff communicate with citizens can make all the difference when it comes to the quality of healthcare for someone with a hearing impairment. Take Alan, a cancer patient who is deaf and has additional needs requiring month-long radiotherapy. There were no interpreters booked for his hospital treatment because of the prohibitive cost and because the procedure was the same every day. However, nurses needed a daily understanding of how Alan was feeling.
Alan’s support staff at Action on Hearing Loss created a wellbeing log, encouraging Alan to complete the form before each day’s treatment. The daily record answered all the questions the nurses would ask and enabled them to work out adjustments to Alan’s treatment. It also meant Action on Hearing Loss could monitor any side effects.
As a result, the radiotherapy was completed successfully, with clear and accurate communication between Alan, nurses and support staff. As Action on Hearing Loss says of such adjustments, ‘There are steps we can take to increase a person’s autonomy and privacy in their involvement with health services.’
However, there are also common and significant challenges in relation to supporting people’s good health. One issue, for example, is that care staff and those they support have a low awareness about the importance of living a healthy lifestyle. Providers also report poor access to mainstream NHS community services. Letters about screening are not accessible, for example, and fail to explain what people are being invited to. There also needs to be a clear understanding about the rights of disabled people to reasonable adjustments in healthcare settings. So, what can be done?
Solutions for providers
Among the answers is for social care providers to equip their staff with the skills and knowledge not only to advocate for the people they support, but also to develop confidence to engage in equal conversations with health professionals. For this to happen, the issue of someone’s health must be regarded as an essential element of the support worker role. Staff should also have time to talk, reflect and discuss the health needs and outcomes relating to the people they support.
Collaborative relationships, high-quality communication and record-keeping and a willingness to engage in important conversations with disabled people and their families are also fundamental aspects of good practice. VODG members suggest that achieving this involves thinking about what care workers need to know from health staff in order to support the person well. A good rule of thumb is asking yourself, ‘What would I expect for someone I love?’
Learning from each other is equally vital in improving how we tackle health inequalities. Sharing good practice, both within an organisation and externally, includes disseminating good news stories and being willing to share learning when things go wrong.
Improving how services support people with their health needs is a crucial piece of the jigsaw when it comes to delivering better health outcomes. Good healthcare can contribute to the improvement in people’s life expectancy.
VODG is committed to contributing to the health inequalities agenda by championing the rights of disabled people through our campaigning and promoting good practice. If individuals are to have better health outcomes, then we need far greater awareness of the health issues experienced by disabled people and more widespread use of reasonable adjustments. Social care professionals have the power to influence both these issues.
The fact that disabled people have poorer health outcomes than the general population is something about which we, as a society, should be ashamed. However, it is a challenge which care providers are strongly placed to tackle.
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