Janice's story: PIP helps me stay independent

Janice Tillett, 54, has osteoarthritis, Stickler syndrome and is deafblind. She relies on PIP to give her a level of freedom that most people take for granted and fears that, without it, her physical and mental health would suffer.

Managing multiple health conditions

I’m deafblind, I have arthritis caused by Stickler syndrome which affects the connective tissue throughout the body, and I rely on Personal Independence Payment (PIP) to help fund the extra costs incurred due to my conditions.

I’d needed an osteotomy on my left knee when I was around 11 but was 16 by the time they diagnosed Stickler Syndrome. The first hint of an arthritis flare was when I was training for the 1992 Paralympics, I swam for Team GB. My left knee started bothering me for the first time since I was 12 and I thought it was due to pushing my swim training but it was the possible start of arthritis which was diagnosed around 20 years ago.

Since then I’ve had a lot going on which has really impacted my wellbeing. I’ve had both hips and my left knee replaced and recently received hand therapy. My last x-ray in 2016 showed degenerative changes and was clear it’s becoming more symptomatic but I’ve been discharged and told to do exercise because they can’t do any more for me.

I’m only 54. The NHS is a blessing in lots of ways but I find they don’t think of you as a whole person, only the part they’re dealing with in that moment. 

PIP helps me to manage my physical and mental wellbeing so I manage my condition rather than the condition managing me

I have sports massages to try and make sure my joints don’t get any worse but that is not counted as a disability related expenditure so it has to come out of my PIP. Sports massage loosens off my muscles, tendons and connective tissue. My masseuse also massages my fingers, thumbs and knee joints once a month which is all really important.

I also use PIP to pay for exercise. I go to the gym and swimming four times a week and need somewhere accessible, without PIP I could not afford it which would be dire for my health and well-being.

I have two lovely volunteers who take me to the swimming pool and gym because my sight means I can’t go on my own. My volunteers are a real blessing but my condition limits me and really has meant I’ve lost that sense of independence.

I try to keep as fit and healthy as I can, swimming and the gym are also psychologically good for me. I hope keeping exercising is supporting my joints. I was told by the person at the private clinic where I have my sports massage that my knee replacement was successful because I’d exercised before, during and after the process.

I have a care package through adult social care but have to contribute around £70 a week through PIP and, if we go out, I have to pay for the support person’s expenses. It’s the only way I can get out and is very important to me and means I don’t get isolated. It’s the same with needing talking software for my phone and computer which is also partly funded by PIP, the technology isn’t cheap but I need it to keep in touch with people.

Losing PIP would have a big impact

At the moment I can go away on supported access holidays because I can get around myself but if I lose my mobility I can’t use a scooter or wheelchair because of my sight so I’d be pretty isolated.

PIP gives me a level of freedom most people take for granted and I’m thankful PIP is assessed on you as a whole person.

It makes me anxious to think about not being able to afford the gym or massages which help preserve my joints and help me manage my condition. It’s about maintaining my physical and mental wellbeing, stopping the condition deteriorating sooner. I try not to live my life in fear but it is a worry that I wouldn’t be able to afford to have my health and wellbeing managed in a positive way.

I agree the welfare system needs to be looked at, I just want them to look at it in a fair and equitable way and not pick on some of the most vulnerable members of society. I want the Government to stick to their promise to work with disabled people and not rush something through and make a mess of it. The changes need to be done justly and properly. Arthritis UK has been very important in highlighting this issue.

I’d say to the Government, don’t rush, that’s when it goes awry. I understand the need to look at the system for everyone’s sake but please talk to disability charities, please consider the most vulnerable members of society.