Katy and Jackie’s Story

Katy Tyler, aged 24, lives in Dorchester, Dorset, with her parents. She has profound learning disabilities with complex health needs. She needs support 24 hours per day for seven days a week. Katy’s personal health budget was used to prevent her moving into permanent residential care, and to pay for person-centred care at home. Katy’s health, including psychological wellbeing, weight and vulnerability to infections, has improved dramatically, says Katy’s mother, Jackie.

Before Katy was offered the option of a personal health budget, she attended a day centre five days per week. Agency carers would also visit one hour in the evening

Monday to Fridays to help bathe Katie, who is wheelchair bound, and put her to bed.

However, Katy did not like the day centre as staff there had neither the knowledge nor resources to provide the 24-hour support she needs. For example, although Katy cannot speak she does have her own body language. But you can only know this language once you get to know Katy. At the day centre she would thrash her arms to indicate she wanted to go to the toilet. But this would be misinterpreted as an epileptic seizure. Katy would get so frustrated.

Katy is sociable and, like any young woman, enjoys being with other people. She loves going to the cinema and into town shopping. Plus, cognitively Katy understands what is going on, although she cannot verbalise how she feels. As a result she would just get bored at the day centre, so just went to sleep in the corner of a room. Katy’s healthcare needs were not getting met, but with her profound disabilities there was nowhere else for her to go.

When Katy was not at the day centre my husband and I would at home provide the care she required. Plus, we gave Katy all her medical treatment, including specialist drugs for her epilepsy and intravenous antibiotics.

When Katy’s social worker informed us about personal health budgets, we first had to complete an assessment of Katy’s healthcare needs. All her nutrition and hydration has to be provided via a gastric PEG feeding tube. She also needs oxygen and a lot of medication. Essentially, looking after Katy is like looking after someone in intensive care. She really needs two carers at any one time, day and night.

Katy also needs physiotherapy, hydrotherapy, speech therapy and access to a dietician. We also had to detail how Katy’s everyday life is affected by her disabilities, including that she has no social life. All this was put down in a care plan. In addition, as carers we desperately needed some respite. I previously had suffered a breakdown as a result of the immense pressure we were under, and had to give up work as a teacher.

We were granted a personal health budget for two carers to provide eight hours care per day, Monday to Friday, and one hour evening and morning care seven days per week.

For three days a week we decided the carers should be with Katy at our home, and the other two days at the day centre, so she can keep in contact with other people. Also the day centre is where Katy can have sessions with a physiotherapist, hydrotherapist and dietician.

What was immediately positive about the personal health budget was that we could choose and employ Katy’s carers. If carers are to spend eight hours in my house five days a week I want to be able to choose them myself.

We needed to recruit three full-time and four part-time carers. For the full-time vacancies we secured three carers from the agency that previously worked with Katy.

The recruitment side to the personal health budget was what I initially worried most about, as we needed to recruit people who lived nearby. But after I put an advert in the parish magazine we found two local carers. I also recruited a friend of a friend who was keen to go into care work. New carers attended a Skills for Care six-day basic care course run by the county council.

The key to having the right carers is to have people who enjoy care work. This in turn makes Katy happy.

A personal health budget has given us control over who cares for Katy, how and when. I manage the carers myself and plan the four-week care rota. I did not have this option before. Because I did not want to be involved in the legal and payroll side of employing carers we decided to have assistance from a charity called Enham. They took responsibility for the legal and tax affairs, payroll, and insurance.

If as parents we decide we could no longer cope and insisted that all Katy’s care was met elsewhere this would involve a house being bought by the NHS and then converted for the use of the disabled, equipped with medical requirements and appropriately staffed. I’ve been told this could cost more than £5,000 a week to run with an initial outlay of hundreds of thousands of pounds.

Some of these funds would have to come from benefits, because in this situation Katy would be living away from home and she would then be entitled to housing benefit, council tax benefit and income support, none of which she is claiming now.

To be honest, the personal health budget has been the best thing to have happened for Katy for many years.

For the first time in her life Katy has reached her target weight. This is because she is no longer burning up calories thrashing around trying to convey her needs to people who don’t understand. She is now fed four times per day, as opposed to every three hours, day and night. Plus she no longer injures her hands and feet when thrashing. She used to get many chest infections, but she’s not had one for 18 months.

Katy is now calm and happy. Her social life has improved immensely as she has developed better friendships with people at the day centre and her carers who take her to swimming classes, shopping and the cinema. Katy’s a different person. We’ve now got our Katy back.

As for us as carers, for the first time in 10 years we have been able to go on holiday, while Katy stayed at home.

Importantly, we now are able to sleep better, and are so able to be better carers. I’m off antidepressants and back at work two days per week.

If we did not have the personal health budget option we would have become really ill and been unable to look after Katy anymore.

My message to other people thinking of moving to a personal health budget is definitely do it. It gives the person the freedom to live their life as well as improve their health. It’s certainly achieved this for Katy.