Sylvia’s story

Sylvia, 67, from Dorset, uses her personal health budget to cope with the disabling effects of a chronic central nervous system illness. The budget pays for home help and for Sylvia to pursue art and creative writing classes. As a result, Sylvia’s pain, fatigue and general mental health and wellbeing have improved markedly.

I suffer from the combined effects of Fibromyalgia Syndrome (similar to ME), Osteoarthritis, and Sjogrens, an autoimmune rheumatic disease.

Together the symptoms – including chronic fatigue, joint pain, an inability to stand light and noise, anxiety and depression – are extremely disabling. Fibromyalgia Syndrome affects everyone differently, but the worst aspects for me are the fatigue and depression. Because my body reacts badly to all medication, I cannot take any to control my symptoms.

Since 1994 my disability has taken control of every day. I do not know how I will feel when I wake up each morning.

I used to sit on my chair all day watching daytime television. It was soul destroying.

On top of this, my elderly mother has dementia and looking after her has been really demanding. To help with my depression and stress I have had counselling via the NHS on and off for 10 years.

My marriage was also under a great deal of strain. As well as helping care for my mother, my husband was having to look after me. The relentless pressure took its toll on my husband’s health.

My fatigue means I really struggle to do everyday things such as having a bath – getting in and out is really difficult. Plus I cannot lift heavy saucepans of water for cooking.

“I used to really enjoy going to creative writing classes, but had to drop them because of my chronic fatigue.”

I used to really enjoy going to creative writing classes, but had to drop them as with my chronic fatigue I would sit there feeling like a zombie. I had also given up art classes as I had to drive 16 miles to attend. It was just too exhausting.

Eventually it was my mother’s community matron who suggested I apply for a personal health budget. Ray, from Dorset Primary Care Trust, visited my husband and I at our home and we discussed my healthcare

needs, and particularly what things, such as outside interests and help around the home, would help me cope better with my symptoms. I felt like I was really being listened to.

With Ray I completed a care plan which set out my goals and an action plan of priorities. Throughout this process I had help from an agency that provides disabled people in the area with independent support when applying for personal health budgets.

I was allocated a personal health budget of 10-12 hours per week of help at my home, plus three hours for a cleaner. All in all, this covers ironing and basic cooking, and duties such as driving me to and from art and creative-writing classes which the personal health budget also pays for.

Having the driving help means I am able to return to these hobbies. They really stimulate my mind. I’ve got more of a life. Being able to do activities outside the house, together with the confidence boost that this gives me, means I am better able to cope with my pain.

“I still have my disability 24-7, but physically I am more active, the pain is more manageable, and I have more confidence.”

The personal health budget also provides for me to have muscle massages once per fortnight at my home to help with my joint pain. And I have also started swimming to help with my pain and energy levels.

The personal health budget has also enabled me to buy things which improve my quality of life. I now have an inflatable bath aid which means getting in and out of the bath is so much easier. It’s a godsend. I also have a steamer which means when cooking I no longer have to lift saucepans filled with water.

I decided that I would prefer to manage payments myself for my home help and care. I receive the personal health budget as a direct payment for health care and I have a separate bank account from which I pay everyone, including the agency that supplies the home help.

Because I have power of attorney over my mother’s affairs I am used to book-keeping and managing money. It gives me a feeling of control over my life.

Has the personal health budget improved my physical and mental health? Yes, definitely. I still have my disability 24-7, but physically I am more active, the pain is more manageable, and I have more confidence.

Thankfully with the home help I receive I also have more energy to have proper conversations and time with my husband who has been able to take respite from looking after me. He has even fulfilled a life-time ambition to visit Hong Kong! As a result, our marriage is much stronger.