Anita and Trevor’s story

Trevor, 59, from Hull, explains why a personal health budget enabled his wife Anita, 56, who has the degenerative condition Huntington’s Disease, to employ carers and so provide desperately-needed support for both of them.

It’s been five years now since Anita was diagnosed with Huntington’s Disease. The disease has changed our lives so much – it’s been terrible. Anita needs 24 hour care. Her mobility is affected and she often falls. Anita is unable to wash and dress herself, nor can she swallow. This means all her nutrition has to be given through a feeding tube six times a day.

Because Anita’s mood often fluctuates she sometimes gets aggressive or confused. Once Anita got out of bed at 2am and filled the bath with boiling water and stood in it, burning her feet. It breaks my heart to see how she has become.

Because Anita needs 24/7 care I used to get no sleep. Generally, two or three o’clock in the morning was the only time I could go out and shop. I became physically and mentally exhausted, and lost four stone in weight. I was Anita’s only carer.

“I left my job as a forklift driver to care for Anita. We survived off our savings and £53 per week carers allowance.”

I left my job as a forklift driver to care for Anita. We survived off our savings and £53 per week carers allowance. Social services suggested to me that I arrange for Anita to go into a nursing home so I could return to work. But I’ve always wanted to look after Anita at our own home, as she herself wishes.

Two and a half years ago Anita was admitted to hospital with pneumonia, and when discharged she was referred to the Long Term Conditions team and Community Matron Debbie came to visit. Debbie asked us to describe in detail what support we needed. Anita didn’t want anyone else to come in to wash her nor did she want to attend a day centre. She tried it once and didn’t enjoy it. Anita and I explained to Debbie how Anita would like to go swimming as she always felt distinctly better afterwards. Anita also said she would like to be able to do normal things like go shopping and attend the theatre and cinema. Anita always loved doing these before she became ill. She also said that she would like to feel more feminine by having her hair done and nails painted. These are vital for Anita’s confidence, but are aspects of her life I have not been really able to help with.

“Lizzy has made such a remarkable difference to Anita’s life. For example, when they go shopping Lizzy and Anita will sing together.”

Together Debbie, Anita and I discussed the option of having a personal health budget. So we completed some assessments and applied for personal health budget funding from NHS Continuing Healthcare. Initially we were allocated £350. We decided that carers were of most value to us, so we used the funds to cover 35 hours of care. After a review our budget was increased to £490, enabling 49 carer hours for the week.

At the start, our only option was to use carers from an agency. Because we didn’t want lots of different carers involved, Debbie met with the agency and explained that we wanted as few individual carers as possible, so providing Anita with consistency and not a continuous and unsettling flow of strangers into our house.

Anita now has three carers –Lizzy, Charlie and Dawn – for the 49 hours, and Lizzy is the main carer. She really understands Anita’s needs, taking her to the theatre, cinema and shopping. She also takes her to the seaside and they travel together on buses which Anita enjoys because people talk to her. If Anita doesn’t want to go out, they stay in and Lizzy will give her a foot spa and paint her nails, listening to music together.

Lizzy has made such a remarkable difference to Anita’s life. For example, when they go shopping Lizzy and Anita will sing together. It’s great to see. You can see the joy in Anita’s face – she lights up. Charlie goes swimming with Anita, and Charlie and Dawn also take Anita out and cover when Lizzy is on holiday.

“Since the personal health budget, Anita’s mood is now so much brighter.”

Since the personal health budget, Anita’s mood is now so much brighter. Her speech is better when she is involved in activities. Anita feels much better in herself and really enjoys spending time with the carers.

Plus, Anita’s psychiatrist has written a letter noting how much improved Anita has become since she has had carers from her personal health budget. So much strain has also been taken off me. We are now looking to employ our carers through a direct payment. Employing the carers directly could enable Anita to receive up to six hours more care each week.

To be honest, our personal budget has opened the door to a better world. The professional help for Anita has not only dramatically improved her life, I feel it has also saved mine.