Mom with a rare disease says there isn't enough support

Rebecca Humphreys

A mother who suffers from a "debilitating" rare disease claims that there is a lack of psychological support for those with rare diseases.

Behçet's disease was discovered in Caerphilly resident Rachael Humphreys, 42, almost 20 years ago.

She claimed the syndrome affected her eyes, skin, and joints and gave her "horrendous pain.".

The Welsh government deemed it "fundamental" to attend to the mental health requirements of patients with rare diseases.

When it flares up, Ms. Humphreys said, "it's really aggressive and knocks me off my feet.".

"Because it can affect so many different parts of your body, you do need a lot of advice from specialists. ".

She said there was a gap in mental health support despite having seen numerous specialists in Wales.

She claims that although she takes medication to manage her anxiety, she has never been offered counseling.

Rachael Humphreys
The Behçet's disease symptoms, according to Rachael Humphreys, are "debilitating.".

You go through this grieving process when you are diagnosed with a rare disease or any other type of chronic illness, she explained.

"Really, you've just been left to deal with a disease that has stampeded into your life because you've lost your health.

"For me, a flare up is when I experience a really intense period of grief. Because you're in excruciating pain, but also because you're becoming aware that something is wrong with your body. ".

Ms. Humphreys claimed that she founded her own Behçet's disease support group, which has about 50 Welsh members, in response to a "lack of support.".

"In Wales, we don't have the coordinated approach or the specialized treatment for Behçet's. It's about me trying to direct myself where I think they should go," she said.

Prof Iolo Doull
Prof. Iolo Doull emphasized the impact of rare diseases as a whole.

About 170,000 people in Wales are affected by rare diseases, according to Prof. Iolo Doull, chairman of the Welsh Rare Diseases Implementation Group.

I think we need to acknowledge that some diseases are so uncommon that there may only be 10 cases in the entire UK, he said.

Therefore, if there are many patients in Wales, it is only natural that we would strive to provide them with the highest quality of care as close to home as possible. However, there are times when we have to accept that people will travel across the UK to particular centers.

"It's critical that patients with rare diseases have equitable access to mental health support within health boards. ".

With improved access to medications and a new clinic opened in Cardiff to expedite diagnoses for syndromes so uncommon they lack a name, Prof. Doull claimed that Wales was setting the standard in the field of rare disease.

Disability Wales, on the other hand, claimed that after receiving a diagnosis, many of its members feel "pushed off.".

According to disability equality officer Alex Osborne, "it can be really difficult to navigate when you're getting a mixture of support or across the border, just because the NHS in England and Wales are so different.".

"It's one thing if people have to travel a long distance for care or surgery, but it's quite another when they return home and are left entirely on their own to carry on.

"We really want more support for people with disabilities overall, but we also want more support when people receive new diagnoses. ".

Alex Osborne
Alex Osborne advocated for more prompt assistance for those who have received a diagnosis.

The Aneurin Bevan University Health Board expressed regret at learning about Ms. Humphreys' circumstances.

A spokesman said, "We are committed to playing our part in helping to improve the lives of people living with rare diseases. We are participants in the Wales-focused action plan developed by the Rare Diseases Implementation Group.

"We kindly request that Ms. Humphreys get in touch with us so that we can address her concerns and offer her any necessary support. ".

While local health boards offer mental health support, the Welsh government noted that patients may have to travel further to access specialized care for more uncommon conditions, including mental health support.

"In 2022–2023, we will invest an additional £50 million, and by 2024–2025, we expect to have increased that amount to £90 million.

. "

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