Rise in chronic illnesses 'threatens Welsh NHS'

Phoebe Lewis found her own coping mechanisms to navigate school with an undiagnosed chronic condition.

It meant naps in breaktime and arriving "super early" to do homework, because by the end of the day she was exhausted.

The 26-year-old said getting her endometriosis diagnosis was a relief after years of being told she was dramatising her symptoms - but it also confirmed "it's a chronic condition that can get worse".

A Senedd health committee report said more support is needed for the growing numbers living with one or more long-term conditions in Wales.

The Welsh government said it will consider the recommendations and respond in due course.

A common theme raised by those living with a chronic condition is the need to prioritise how low energy reserves are used and the ripple that can have on all areas in life.

"You have to prioritise where you're putting that energy," said Ms Lewis, a project manager for a pharmaceutical company in Cardiff.

"Whether that be in your relationships, friends, family, social arrangements, or things like school and work.

"And that can be quite overwhelming - especially when you're a teenager growing up."

She supported calls made in the report for better mental health support to be provided to all patients living with a chronic condition, particularly as many will have already battled for a diagnosis.

"It really impacted my self esteem over the years going to medical professionals explaining my symptoms and being dismissed - that's something I've had to work on over the years."

The health and social care committee heard that developing a chronic condition by the time you reach 40 or 50 has been normalised for some people.

"The idea that you work all your life and then you will spend the last years of your life in preventable disability and pain is something we have to shift," said Prof Jim McManus from Public Health Wales.

Nearly half the Welsh adult population has a chronic or long-term health condition, with 19% experiencing two or more.

The health committee said the rising trend in the numbers of patients with one or more longstanding illnesses "poses a significant threat to the future sustainability of the health and care system in Wales".

It found there is a postcode lottery for patients, and called for services to be redesigned around the patient, rather than the condition.

The report also called for:

• A service reshape, to provide one-stop-shop clinics, bringing together different professionals in one place

• Better public awareness and use of other health professionals who can support a fuller range of needs

• Best practices to be shared

• Workforce planning, particularly for specialist nurses

• Better mental health support for patients and training for medical staff

There was a consensus that services and specialists focus on a single condition or organ, meaning those with multiple conditions could have numerous interactions with healthcare professionals, adding to delays.

While plans have been made for a more "person-centred approach", the report said that is not being done consistently or at the scale and pace required.

The committee also heard that "health inequalities are widening and chronic conditions are more prevalent amongst ethnic minority communities and deprived communities".

Currently around half of all GP appointments are spent with patients who have long-term conditions.

The committee heard that GPs felt frustrated that 10-minute appointments are inadequate to cover the complexity of patients' needs, while patients reported feeling there can be a lack of empathy for their conditions.

But Calum Higgins from the Chartered Society of Physiotherapists told the committee there can be a tendency to "over-medicalise" in the NHS, whereas allied healthcare practitioners will bring a different perspective.

"They look at the person and what they can achieve and what they want from their health and their lifestyle, rather than maybe just simply treating something that's been diagnosed."

The report heard praise for specialist nurses – particularly for Parkinson's disease – yet the Royal College of Nursing said without a central database and commissioning strategy, an "entire service can collapse" if one person moves or retires.

The report also noted "increasing concerns for unpaid carers" and the impact on "already overstretched services" if they were no longer able to care effectively.

Dr Emma Rees, a specialist on chronic conditions at Swansea University, said there are already good examples of specialist nurses working alongside other healthcare professionals to provide a more holistic support for patients.

"We need more of those other professionals who are appropriately trained – because it's quite patchy," she said, adding that extra training is also needed.

She added that more research is also needed into "which services are effective and how effective they are".

"Equally important is that if something is not working or not adding value, that we have got the evidence to say we should stop doing this and do something else instead," she said.

Chair of the health and social care committee, Russell George MS, said: "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."