People living with long-term health conditions - such as diabetes, endometriosis, chronic fatigue and autoimmune conditions - are not getting enough support from NHS health and care services to effectively manage their conditions and enjoy better health for longer.
In a new report published today, 29 January 2025, the Senedd’s Health and Social Care Committee is calling on Welsh Government to refocus efforts on delivering person-centred care in the NHS, with integrated services for people living with long-term health concerns.
Furthermore, greater emphasis is needed on preventing health deterioration and to alleviate pressure on services by reducing the need for emergency intervention and hospital admissions.
46% of adults in Wales experience chronic conditions, according to Public Health Wales, with 19% having two or more long-term conditions, and these numbers are expected to rise.
People living in deprived areas are more likely to develop chronic conditions at a younger age and are expected to have at least one condition by the time they are 50. These people spend fewer years in good health, requiring more support from NHS services.
Treat the person not the condition
The Welsh Government’s A Healthier Wales plan, published in 2018, sets out its ambition for patient-centred care, focused on coordinating tailored services to meet individual needs. This will be achieved by ensuring better co-operation across departments, support from specialist nurses, ‘one stop shop’ clinics and advice on diet, exercise and wellbeing.
The Committee heard that this is far from patients’ current experience of the NHS in Wales. It heard how people’s conditions are treated in silos, with no shared decision making, leading to delays and confusion as patients struggle to navigate the system. There is also a worrying lack of mental health support, especially at the point of diagnosis.
Phoebe Lewis, 26, from Cardiff was diagnosed with Endometriosis at 19, 7 years after first seeking help for painful periods. She says:
“Having a long-term condition impacts every part of your life, but you only ever get help for your physical symptoms on your worst days. Proactive care and support for mental health is so important to live well and avoid problems in the future. Only getting help when you’re sick traps you in a cycle and it’s harder to recover each time: harder to go back to work, harder to live a normal life.
“After having surgery a couple of years ago, I am doing much better. I have done a lot of work to help myself by eating well and getting regular exercise, which is something I really struggled to do when my symptoms were worse. I’ve done this with little help from the NHS and had no idea if I was doing the right thing or if it was going to make a difference.”
Preventing ill health
The A Healthier Wales plan also recognises that prevention measures, both to stop chronic conditions and slow their progression, is crucial for improving people’s quality of life and reducing pressure on services. Public health initiatives can reduce the probability of people developing chronic conditions, whilst regular screening for patients ensure early intervention to spot problems before they get worse.
However, preventative work is often not a priority and it’s not clear what action has been taken since the publication of A Healthier Wales. The Committee is calling on Welsh Government to set out what action has been taken to shift services towards prevention, and outline how the refresher actions to deliver A Healthier Wales support this shift.
Sylvia Penny is 74 and lives in Dinas Powys in the Vale of Glamorgan. She has Type 2 Diabetes and multiple other conditions including Bilateral Bell’s Palsy. Her frustration lies with the lack of communication and confusion in monitoring her condition.
“The care, when I receive it, has been exemplary, but the route of getting to it takes too long. You get sent from pillar to post, and there is a lack of communication between departments leading to more confusion to navigate. It’s a waste of time, effort and money for everyone involved. Several times I have been prescribed the wrong medication, which has made me unwell, which means more time and effort to have it corrected. It makes it difficult to know who is responsible and whose opinion I should trust.
“A lack of diabetes monitoring has led to the development of a third nerve palsy, which has led to more tests, treatment and medicines. This continues and I am very grateful for the care I am now receiving from the hospitals."
Unsustainable burden on our NHS
The Chair of the Senedd’s Health and Social Care Committee, Russell George MS, says:
"Despite repeated calls for action, and 6 years since the publication of the A Healthier Wales plan, the Welsh Government is still failing to provide the support people need to live well for longer. This failure not only impacts individuals' quality of life but also places an unsustainable burden on our NHS.
"While much attention has been concentrated on NHS acute care, there has been far less focus on people who rely on regular access to healthcare to manage one or more chronic conditions.
“We have made a number of recommendations to improve the situation, but ultimately, we are looking to Welsh Government to take immediate, decisive action to protect the health of the nation and the future of the NHS.”
Read the report: Supporting people with chronic conditions
