The number of people living with multiple long-term conditions is increasing. We need to re-think healthcare to ensure everyone can live life to the full
Jack Chisnall takes 21 tablets a day, plus injections for his diabetes and an inhaler for his asthma. Despite having reduced mobility, he has frequent medical appointments – between five and 15 a month. Jack, 65, from Lincolnshire, also has arthritis, an underactive thyroid, issues with his gallbladder, and carpal tunnel syndrome.
He’s not unusual. More than a third of the UK adult population (about 18 million people) live with a long-term condition, such as heart disease, diabetes or cancer, and it’s estimated that as many as half of them live with more than one. The number of people living with multiple long-term conditions is predicted to keep growing, adding billions to health and social care costs.
“Many patients take multiple drugs, and it’s the responsibility of the doctor to know how these will interact, and to manage the risks and side effects”
Dr Mike Knapton
BHF Medical Director
This is common partly because many conditions have the same risk factors, such as obesity and smoking. Having one condition can also increase your risk of developing another. For example, diabetes, rheumatoid arthritis or kidney disease can raise your risk of heart disease. Rising life expectancy also means more elderly people are living with multiple conditions. Everyone will need the right support to manage conditions well.
Dr Alf Collins, NHS England Lead Commissioner for long-term health conditions, describes the rising number of multiple conditions as “a massive quandary”, which he says is “only set to get worse”.
For Jack, disjointed healthcare adds to his health challenges. “Thankfully, I’m retired. I don’t know how you’d manage all these appointments and a job,” he says. “I’m a stoic person and I try to get on with it, but it would be lovely if there was one person who could take an overview.”
Jack has had diabetes since his 20s. His carpal tunnel syndrome limits his hand movements. An enlarged prostate gives him bladder-control issues, and surgery for bowel cancer means he uses a colostomy bag. He says: “I find that healthcare works in silos. There’s no point in talking to someone in oncology about the carpal tunnel in my hands – they just wouldn’t know what to do.”
As well as the problem of multiple uncoordinated appointments, Jack feels that doctors don’t always pay enough attention to things that affect his quality of life. “Doctors tend to go on about the asthma and diabetes and the bowel cancer, but these aren’t the things that have the most effect on my life,” he says. “It’s the lack of mobility, bladder control, and you wouldn’t believe the amount of glassware and crockery I go through, because of the problems with my hands.”
Dr Mike Knapton, a GP and BHF Associate Medical Director, says: “Dealing with long-term or multiple health conditions requires a lot of time talking to patients to diagnose the problem, making sure they understand it, then explaining treatment options and the side effects of the various drugs.
“Many patients take multiple drugs, and it’s the responsibility of the doctor to know how these will interact, and to manage the risks and side effects.”
Jack appreciates the fact that his doctor discusses medications with him and allows him to have some control over this. Jack knows, for example, that grass sets off his asthma in summer and that dust can be a problem too, so he anticipates his reaction and self-medicates accordingly. He also looks after his own health by exercising and stretching for around 40 minutes every day.
In March 2016, the National Institute for Health and Care Excellence (NICE) published the first draft guidelines on treating people with multiple conditions. The final guidelines are due in September. The draft guidelines say GPs should identify people with two or more long-term conditions who may benefit from a ‘tailored approach’ to their care. This would particularly include those who are frail, or take many prescribed medications, or have long-term mental and physical health problems.
A tailored approach should include finding out the patient’s priorities, involving loved ones if the patient wants to, coordinating different medical appointments, reviewing the benefits of medications and investigating non-drug treatments as alternatives.
Previously, the Five Year Forward View, launched in 2014 by NHS England, Public Health England and the Department of Health, set out a vision for the NHS. This includes the need to take “decisive steps to break down the barriers in how care is provided between family doctors and hospitals, between physical and mental health, between health and social care.”
The report suggests specialist centres should provide for people with multiple health conditions. More healthcare professionals should be trained to support this.
“If, for example, you live with five long-term conditions, is it right that you see five different specialists?” asks Dr Collins. “Wouldn’t it be better if you had one doctor, who could integrate the views, ideas and knowledge of those five different services?”
There are also plans to integrate health and social care by 2020. However, the challenge is increased by social care funding shortfalls – demand is rising, while budgets are being cut. Integration will be a “big, big challenge,” says Dr Collins. “Social care is means-tested and the NHS isn’t, so there are huge hurdles to overcome before we can integrate them. It’ll happen, but it’s not going to be straightforward.”
Meanwhile Jack, who walks with a stick and can only sit for short periods of time because of his arthritis, continues to live a full life. He gets support from friends and enjoys his hobbies, including studying dog breeding.
“I live alone in an old stone cottage, but it’s single storey, so I can get about, and with planning I can go out for food with friends,” Jack says. “I went to America recently with the help of friends to give a lecture on canine genetics and nutrition.”
How are we helping you to get more joined-up care?
The BHF funded nine integrated care pilot schemes in England, Scotland and Wales between 2012 and 2015. Most of these focused on integrating primary and secondary care for heart conditions.
It is important for people to feel that something is being done ‘with’ them rather than ‘to’ them
Dr Sana Zakaria
BHF Service Innovation Officer
In East Cheshire, the project extended the cardiac nurse role, crossing traditional boundaries of hospital, community, and primary and social care. The team provides joint training and assessment with colleagues specialising in diabetes, respiratory disease, pain management and palliative care. This is better for patients and has reduced hospital stays, saving the local health trust £1,195,000 in two years. After this successful pilot, the NHS has provided long-term funding to sustain this model in East Cheshire.
Building a house of care
We’ve invested £1m into our House of Care pilot projects. This new model is based on person-centred care, where healthcare professionals and patients come together as equal partners to develop a care and support plan. This starts with what matters to the patient and identifies best treatments, the right care and support, and actions patients can take. It considers emotional wellbeing alongside medical issues.
There is evidence that care and support planning leads to improvements in physical and mental health, and enables people to better manage conditions. It’s also in line with the NHS Five Year Forward View.
Previously, House of Care has mostly been applied to long-term conditions other than heart and circulatory disease.
Our House of Care programme is being trialled in Gateshead, Glasgow, Hardwick (Derbyshire), Lothian and Tayside. The approach has three parts:
- Implement routine care and support planning in primary care.
- Redesign services for people with heart and circulatory disease, driven by care and support planning.
- Develop community support for self-management in areas of health inequalities, high deprivation, and high prevalence of heart and circulatory disease.
Dr Sana Zakaria, Service Innovation and Evaluation Portfolio Officer at the BHF, says: “By empowering people with knowledge and the infrastructure to support behaviour change, they will be able to not only take ownership of their health, but also drive it forward as equal partners with healthcare professionals.
“It is important for people to feel that something is being done ‘with’ them rather than ‘to’ them.”
Published on the BHF website