Diagnosis is not a life sentence, says charity

Charity that transforms the lives of people with long-term conditions needs help to reduce its waiting list
Thistle Foundation helps people dealing with chronic pain or difficult diagnosis regain a sense of independenceThistle Foundation helps people dealing with chronic pain or difficult diagnosis regain a sense of independence
Thistle Foundation helps people dealing with chronic pain or difficult diagnosis regain a sense of independence

Living with a long-term health condition can mean adapting just about every aspect of your life. It can be painful and isolating, but with one in three Scots dealing with this type of diagnosis, it’s the reality for many.

Thistle, a charity which helps people make that adjustment, has become so popular that it can’t meet demand and has launched a fundraising campaign in a bid to reduce its eight-week waiting list.

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Cathrin Griffiths, health and well-being team manager at Thistle, said: “A lot of people can’t face waiting that long, especially if it has taken them a while to pluck up the courage to ask for support.

"The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill.""The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill."
"The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill."

“Sometimes, people don’t know organisations like ours exist, and by the time they find out about us they have already been struggling to live with their condition for a long time. We worry about those people who simply can’t wait that long and take themselves off the list — ultimately, we do not want a waiting list at all.”

Around 2,000,000 people in Scotland (40 per cent of the population) have at least one long-term condition, such as multiple sclerosis, Type 1 or Type 2 diabetes, post-traumatic stress disorder or depression.

Margaret Hendry has severe back pain caused by three knots in her spine and yet she is one of the Centre’s most active volunteers. She explained how being part of the charity had changed her life.

“My life before Thistle was non-existent. I saw no one, I met no one, I spoke to no one. All I did was lie in bed and take medication because I was in so much pain,” she said.

"The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill.""The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill."
"The impact of a long-term condition varies from person to person. Its hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ill."

“When I turned 60, I decided it was not going to control my life anymore.”

She joined the gym, which costs just £25 a year, and enrolled on a lifestyle management course, where she learnt pain management techniques and met new people. She has never looked back, and now she even runs regular Tai Chi classes at the Centre for Well-being, in Craigmillar.

Cathrin said: “The impact of a long-term condition varies from person to person. It’s hard to adjust to: people will often go from thinking they are well to having to start thinking of themselves as ‘ill’. Suddenly, they have this label to contend with.

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“Lots of people start to feel isolated because they can’t get around or socialise like they used to. They can feel completely alone.”

Once they are in contact with Thistle, either by GP or self-referral, the team works to find which of the Centre’s many support services will help.

The wellbeing team also works in partnership with the NHS, offering outreach services in eight Midlothian GP surgeries, including Newbattle, Bonnyrigg and Newtongrange, Newbyres, Dalkeith, Mayfield, Penicuik and Leith.

“We support people to take control of their life by focusing on the person, not their disability or health condition. We listen to what people need and tailor our support to that. Then we work alongside people until they are able to manage life without us,” Cathrin added.

It’s an approach that leads to a “virtuous circle”, whereby people who have used the services, often want to stick around as volunteers: just like Margaret.

The Centre, which operates an open-door policy, is funded entirely by donations, and a recent increase in referrals from GPs has put a strain on resources.

“We want to be able to help everyone who needs us, whenever they need us, regardless of what long-term condition they are living with,” said Cathrin.

A Christmas Fair will be held at the Centre of Well-being, Queen’s Walk, Craigmillar from 12.30pm on 2 December. To find out about other ways of supporting Thistle, click here