Declan’s story

Declan has a diagnosis of Duchenne Muscular Dystrophy. He was completely immobile and relied on two carers for all moving and handling needs. He required frequent repositioning day and night to protect his skin, and needed breathing support at night.

Declan and his mother were very reliant on each other, and he had very little independence. Declan’s mother provided a lot of support, but she had her own medical problems, and there was no wider family support. He had access to respite/day care provision, but he reported that he strongly disliked attending this as he felt that the carers there didn’t know him well or understand his needs. He preferred to be at home surrounded by familiar things, with his mum.

As he approached his 18th birthday, Declan was attending college part time, relying on his mum to collect him from college and often having to wait for her to come. Life was a struggle for the family at times, making getting out and about extremely difficult. Apart from college, Declan had little opportunity to mix with his peers. He felt quite self-conscious about his condition and his need for help with self-care such as toileting.

Following his referral to the children’s continuing care team, a visit to the family was arranged and the family expressed an interest in having a personal health budget. They were trying to achieve greater choice and control over their care. For the team, this offered them the opportunity to increase their knowledge of personal health budgets and, in particular, of direct payments on how best to advise families to directly employ personal assistants.

The personal health budget enabled both Declan and his mother to achieve much greater independence. Declan built up confidence in the carers supporting him and built up a friendship with them rather than a more traditional carer relationship. They were similar in age and enjoyed encouraging Declan to access social activities he wouldn’t have previously considered.

At this point, Declan was also accessing a package of support through social care for two overnight stays for one carer. This was not working well for him, as his mum was having to be a second carer throughout the night for repositioning needs. Restrictions on shift times impacted his life as a late teenager; he did not want to go to bed at the time they arrived or indeed get up when they left.

The initial personal health budget outcomes agreed in his personalised care and support plan were to:

  • Have more flexibility and choice over the care package
  • Reduce and prevent hospital admissions
  • Be well presented and have a good skin care routine
  • Increase independence and confidence, with less reliance on his mum
  • Access suitable groups and activities within the community
  • Travel and enjoy holidays

These original outcomes developed into much more than the family had hoped for. Declan’s self-care, hygiene and dignity was achieved but he also grew in confidence and in his aspirations for achievement, seeing exciting possibilities for himself.

The family hoped initially to have a mobility vehicle that carers could drive to support Declan to access social activities without the need for his mum to always be present. He began to go to college independently either with carers or in an adapted taxi, which also eliminated his wait at the end of each day for his mum to take him home. This was a great achievement and improved his self-esteem, Declan also went on to learn to drive an adapted car and passed his driving test.

Declan and his mum were also able to access an activity break, taking a carer with them so that, although mum was on standby, Declan was able to enjoy the activities independently; he also began to make friends. His mum was able to reduce her role of carer and began being a mum again. This improved her health and wellbeing and her ability to work. She also entered into a relationship herself with the increased independence she achieved.

Personal health budgets are now fully embedded within the children’s continuing care team for Leicester, Leicestershire and Rutland, and are the default offer for children. There are plans to extend the offer for personal health budgets to the non-eligible cohort of children who currently have packages paid for through the complex care funding stream. Equipment and therapies will also be considered as a wider extension to the personal health budgets offer.