How will Wales cope with growing numbers of people living with chronic conditions?

Journalist Tyler Mears says her life changed when she was diagnosed with lupus. Credit: Tyler Mears

The last year has seen health become a top priority, with NHS Wales and the nation’s policy makers having to prioritise managing Covid-19.

But as Wales begins to emerge from the worst of the pandemic, the number of people dealing with long-term health conditions looks likely to increase.

It’s predicted that by 2023, more than half of the population is expected to be living with a long-standing illness.

Professor Adrian Edwards is the director of Wales’ Covid-19 Evidence Centre. He says the delays in treatments and tests have created an “incredibly serious” problem, adding: “There are more people who have now got long-term conditions, and there are also real, direct effects of the pandemic on the ability to provide health services to help people with long-term conditions.”

Professor Edwards says delays in treatments and tests have created an “incredibly serious” problem.

Tyler Mears is a senior video journalist at Wales Online. In 2017, aged just 24, she was diagnosed with lupus.

“It completely changed my life," she said.

"I’d gone from an active 24-year-old woman, to being constantly exhausted and in pain.”

Lupus is an incurable condition that affects around 3,000 people in Wales, where the body's immune system attacks healthy tissue. In Tyler’s case, the disease affects her kidneys and her eyes.

“When I was diagnosed, my hair fell out and I had a rash plastered across my face... I felt like I lost my sense of identity," she said.

"My coping mechanism was to forget that I even had lupus.  I didn’t want to talk about it, I didn't want to read about it. But I think that manifested itself then... when I did hear anything about it I would have a panic attack.”

Tyler says lupus affects her kidneys and her eyes.

Research by NHS England shows that over two-thirds of people with a long-term physical health condition also suffer with poor mental health.

In 2015, Eve Bevan from Pembrokeshire was diagnosed with endometriosis, where tissues similar to the lining of the womb grow in other places in the body and cause severe pain. It's a condition that affects one in ten women.

She said: “It affects everything really in my life - so it affects my relationship; my employment. I had fertility issues as well when i was trying for my daughter. I suffer with extreme pain every day.”

Eve has lived with the condition since she was 16, although she wasn’t diagnosed until she was 31.

“It’s had a really big impact on my mental health," she said.

"It's very difficult when you look ok. People don’t understand when you tell them, ‘I’m in pain, I’ve had a bad night, I’ve had a bad day’.

"And a lot of the things you go through you tend to hide, because you feel that people get bored, you feel they don’t want to listen to you any more talking about how you are feeling.”

Eve has been referred to mental health services twice, and has paid for private counselling to help her cope with the impacts of her condition.

Eve Bevan suffers from the painful condition endometriosis, which affects one in ten women.

Professor Edwards believes the mental health side effects of living with chronic conditions will be a big problem as Wales’ emerges from the pandemic.

“I think we are all aware of the delays around treatments and tests and follow ups and providing services at home and so on," he said.

"I'm a GP in Cwmbran and we are seeing a lot of people coming through with the mental health impacts now, so it really is incredibly serious, and ultimately it's going to be about policy decisions. Where do we try to make our investments, shift resources, to achieve the best value?”

Trevor Palmer was diagnosed with multiple sclerosis - a condition that can affect the brain and the spinal cord - in 1994. He thinks people should be given more emotional support when they receive a diagnosis.

He said: “At the time I was 40, so I had a young family and I was thinking that life is not that good. I was being talked to and treated as if I was some sort of sufferer or victim, and I have never felt that way.

“I think more support should be given, and that support shouldn't be in the form of leaflets or websites, it should be having role models provided that they can link up to. People who are dealing with their medical issues positively.”

Trevor Palmer was diagnosed with MS in 1994.

Darren Hughes from the Welsh NHS Confederation agrees that people should be supported to be well.

“What we need is to look at the population’s health as a whole," he said.

"People get involved with the NHS and their local GP after things have gone wrong, but we need to ensure that people are staying well.”

But he adds that the NHS is struggling after more than a year spent dealing with Covid-19.

“[There are] over a half a million people on waiting lists in need of care, and many of them are in pain," he said.

"We are doing everything we can to get them the treatment they need as fast as we possibly can, but I think that we really need to be honest with the public that there is some way to go before we can deliver care at the rate that we were doing before.”

Eve has decided to pay privately to see a consultant for surgery for her endometriosis. Although she hasn’t worked out how to fund the treatment yet, she says the waiting lists post-Covid have left her with no choice.

She said: “The waiting list currently for surgery - prior to the pandemic it was about one or two years, but now the consultant who would be doing the operation told me he has 67,000 hours of surgery, which equates to a 4-5 year wait.”

Eve has decided to seek private treatment for her endometriosis due to the long NHS waiting lists.

But Darren Hughes says some positives have come from the pandemic, and in the long term he hopes the NHS will benefit.

“What we have learned is that we can do things differently," he said.

"One of the positives to come out of the pandemic is that we can change things and we can make things more effective and more efficient. We really do need to change, otherwise we will just end up throwing more money at a system that needs to be reformed anyway.”

You can see more on tonight's Wales This Week at 8pm on ITV Cymru Wales, or catch up afterwards on the ITV Wales programmes page.

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