Janice is 43, and lives with her train driver husband and nine year old daughter in Northamptonshire. She also has complex physical, sensory and mental health needs. Technically her condition is known as Stickler Syndrome, but she prefers to tell people about her symptoms and how they affect her rather than be defined by a ‘label’.
“I don’t suffer from a syndrome, I live with it”.
She’s deafblind and has some hearing using Bone Anchor Hearing Aids but is now completely blind. She has severe osteo arthritis, and has had several knee and hip operations so her mobility is limited. However her disability hasn’t stopped her swimming at an international level for Great Britain between 1989 and 1995, including at the 1992 Paralympic Games in Barcelona.
In 2003 she become the first deafblind person to swim Lake Windermere and competed in the 2009 Great North Swim with the support of a guide swimmer.
A few years ago life became very difficult when she was made redundant from her job with Deafblind UK. Her wellbeing quickly declined and her mental health hit a crisis. It was so serious that she wasn’t able to cope at home or care for her daughter therefore children’s social services were involved. This was the lowest point for Janice, and she’s really determined to find a better way to manage life. This led to her finally receiving a Section 7 Deafblind Guidance Assessment – a full, holistic assessment which looked at her physical and mental health needs, and highlighted some gaps in the support she needed. A personal health budget was suggested as a way to look at what wasn’t working and how her needs could be met in a way that worked for Janice and her family.
She had been a member of her local health club for some time, and it was something she was happy and able to pay for as she still swims and use the gym regularly. However the club’s policy meant that as a blind person she was unable to use the pool unattended, and required someone to be with her. She was able to use her budget to pay for a personal assistant to accompany her to be her “eyes and ears in the gym and pool”.
Massage therapy helps her cope with the pain caused by her arthritis, so the personal health budget also pays for regular sessions.
Her personal health budget isn’t large, but what makes a difference is the assessment and care planning process that has identified what Janice needs to stay well and how the limited funds can best be used to meet her health outcomes. It’s also given them a chance to think as a family – to look at Janice’s needs as a mother as well as someone with disabilities.
“The PHB is a breath of fresh air as it bridges the gaps to look at all your needs. Not just my needs but how this impacts on the whole family”
Janice has been active in her local peer network, and has given talks to health professionals about her personal health budget. She is also a trained ‘expert by experience’ employed by Choice Support who are contracted by the CQC.
Janice feels more confident than she has done for the last couple of years.