In the latest of a series of blogs on Personal Health Budgets, Pete Matuszowicz hopes his story encourages health professionals and individuals to work together to ensure PHBs take centre stage in the future of the NHS:
I’ve always been a very active and practical person.
As a teenager I enjoyed restoring and riding vintage motorcycles and in the summer season I would run hurdles at county athletic meets. In the winter I loved nothing better than trampolining, swimming, lifesaving, first aid and personal survival.
After a stint with British Railways as an apprentice in electrical and mechanical engineering, I went on to train as a Craft, Design & Technology (CDT) teacher, and in 1982 took up a teaching post in the Bahamas.
Living in Freeport on Grand Bahama Island, I lost my right arm in a road accident in 1983. I remember picking my hand up off the floor of the vehicle, lying down on the bench seat and barking orders to my driver to create and apply a tourniquet.
I used a mechanical prosthesis for 29 years and maintained a very active lifestyle: swimming a mile a day in the ocean, boating and free diving for conch, walking for miles on white sands by crystal waters and despite phantom pains, feeling thankful whenever I came across debris from the Haitian exodus that had washed ashore.
However, heavy reliance upon my mechanical prosthesis, and the imbalance caused from having one arm, put my musculoskeletal system under a lot of unexpected strain. No-one ever told me about the long-term impact of wearing a prosthesis and simultaneously maintaining a high level of physical activity.
Four years ago I had reached crisis point, enduring deep muscle spasms and such intense pain that I could not touch my heels to the floor and stand to get out of bed. That was if I could move at all, beyond rolling around like a stiff board. The ambulance service regularly visited the house to free me by administering nitrous oxide gas.
Traditional six week cycles of physiotherapy were not working. I could not turn or tilt my head to the left or right. Physiotherapists would ask where it hurts and I would say: “All over my neck, shoulders and back”.
I was suffering with what I now know to be serious paresthesia down my remaining left arm, similar to an extreme form of ‘pins and needles’. Ultrasound treatment and carpal tunnel surgery reduced the symptoms, but I was still in a bad way. One physiotherapist went so far as to say that I was lucky to be getting any treatment at all given the chronic nature of my problem.
I went to my GP asking for long-term physiotherapy, having benefited from this approach when I lived in the US. I was told that ongoing holistic rehabilitation physiotherapy was not available on the NHS, and it seemed the chronic, complex nature of my condition was simply not recognised.
My GP was understanding and extremely frustrated by the conundrum. All he could offer were painkillers and muscle relaxants which did nothing to enhance my mobility and kept me staring at the world in a trance. At the time my prognosis was continued medication, severe pain and life in a wheelchair; I couldn’t take any more.
So it was I found myself unable to work and despairing for the future as a direct result of disability for the third time in life. However, as luck would have it, another one of my GP’s patients had a personal health budget, so we decided to find out if one would be a possibility for me. Bearing in mind that I didn’t and still don’t, qualify for Continuing Healthcare, I had heard nothing about them.
I can only be grateful to my GP for thinking outside the box.
I live in Hull which was one of the pilot sites for personal health budgets, so we agreed that I’d call the organisation running the pilot, to advocate for myself. Fortunately I was found eligible and my personal health budget was used to pay for holistic deep tissue sports massage. For the first six months this was an intensive intervention, which we have now been able to reduce to one treatment every four weeks. This, along with regular stretching, keeps me mobile.
Personal health budgets are a ‘breath of fresh air’. With an annual review that allows leeway for six extra visits as needed if I overdo things, I have been able to reduce taking painkillers and muscle relaxants to an absolute minimum. Despite the fact I will never again drag a towel across my back to dry off, with care I remain active.
Over four years the annual budget for this element of my care has been slashed by 60%! These days I wear a cosmetic prosthesis and strive to remain as active as possible, riding my precisely modified electric bicycle, constantly stopping to explore photographic opportunities and regularly attending meetings for the national personal health budget peer network, run by People Hub.
Before getting a personal health budget the hardest thing to deal with was the sense of helplessness and inevitability. You feel yourself sliding downhill without an end in sight. My advice to you, if you are on a similar journey to me is don’t give up!
If you’re not the organised type, you can get support from other family members or advocates that you trust. Talk to your doctor. Talk to your CCG and your local authority. All have provided me with an exemplary service. With the recent Mandate from the Government to the NHS expecting a significant increase in the number of people who have personal health budgets, we know that they are here to stay.
With this, individuals, their families and carers will have more power than ever to bring organisations and service providers together, in a way that best serves their needs.
If you feel you could benefit from a personal health budget, make your voice heard. I am confident that there are professionals all over the country ready and willing to help you, and personal health budgets are their opportunity to shine with you!
- Read more about Pete’s journey and his approach to self-management.