UK Disability History Month: King's CRF PPI member shares their experiences

 Kamil, PPI member

 

UK Disability History Month is an annual event that aims to promote disabled people's rights and their struggle for equality now and in the past. Taking place from 14 November until 20 December, this year's theme is 'Disability, Livelihood and Employment.'  

King’s CRF Patient and Public Involvement (PPI) member Kamil has autoimmune diseases including ulcerative colitis and is also immunocompromised due to a liver transplant.

About his health, Kamil shared: “It is generally poor, unpredictable and can fluctuate a lot. There are days when I am absolutely wiped out and spend most time resting in bed, so I have to pace myself and plan what I can realistically achieve in a day.

“I am limited in terms of what jobs I can do, and I am in the process of retraining for a second time. In 2018, I had to give up a job in a refurbishment garage as it was physically demanding, requiring 50 hours week at minimum so I did not have enough time to rest and recover.

“I also had to regularly take time off for doctors’ appointments and tests and unfortunately there wasn’t an opportunity to move to a less demanding position in the company. It would have been helpful to have reasonable adjustments put in place, including more breaks, a shorter working day and lighter duties.”

Kamil has participated in research relating to his health issues, for example in studies relating to liver disease and also quality of life. He has been part of the PPI group at the King’s CRF for a couple of years.

“My experience of participating in clinical trials have been overwhelming positive. I see it as an opportunity for additional tests and a second opinion, and have taken part in trials testing new medication and medical devices.

“Since I’ve become involved in PPI, I’ve had a chance to collaborate with different researchers and institutions such as the King’s Clinical Research Facility. I put myself forward if I think I either have experience or knowledge relevant to a project.

“If I had to tell someone one thing about hidden disabilities, it would be: not to assume that if someone looks hale and hearty, that they are. People may be ‘keeping up appearances’ while living with a crippling hidden disability including mental health issues.

“In a way, having a hidden disability could be harder than having a visible physical disability as people may not believe you and may not make any concessions."


Tags: NIHR Wellcome King's Clinical Research Facility - King's Clinical Research Facility -

By NIHR Wellcome King's Clinical Research Facility at 26 Nov 2024, 13:29 PM


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