Location: LincolnshireI have Profound intellectual and Multiple Disabilities (PIMD), so my mum and dad are writing this on my behalf. My name is Rebecca, I am 48 and live in my own pu...
I have Profound intellectual and Multiple Disabilities (PIMD), so my mum and dad are writing this on my behalf.
My name is Rebecca, I am 48 and live in my own purpose-built, wheelchair-accessible bungalow adjacent to my parents' house in Lincolnshire. Because of my level of disability I require one-to-one support, both day and night.
I don't have mental capacity. I have uncontrolled Lennox Gastaut epilepsy, and cannot walk or talk.
I have lived in my bungalow for 22 years and am really happy there. I need some specialist equipment, such as a tilting bath, a ceiling hoist, and a bed that rocks and tilts to prevent pressure sores.
Although I have lots of problems I do have a really great life when I feel OK. I can go out in my wheelchair-accessible car and love to visit interesting places, especially if I can lunch out as well!
For some years my support package was provided by either domiciliary or healthcare companies, and they were not person-centred enough to keep my happy. In October 2017, after an eighteen-month struggle, my parents managed to get NHS Continuing Healthcare funding for a Personal Health Budget (PHB) for me, and it has made such a difference to my life. My support staff now help me to do more things at home and they are really good at finding things to keep me stimulated.
The companies that had previously been commissioned by our local NHS Clinical Commissioning Group (CCG) to provide support for me, seemed to be focused only on my health issued and I become bored, then depressed, because I had nothing to look forward to.
Sometimes, people came to support me that didn't know anything about me, and had no idea what sort of person I was and what I liked to do. I would be left in bed for hours and lost interest in my home and the people around me. My family were not encouraged to be involved with my life and had little say in the recruitment of staff.
My mum and dad found out about Personal Health Budgets, and they liked the idea that by having a budget they could recruit and employ a new regular team of support workers who would work with me in a much more person-centred way.
My family have been able to actively recruit new staff, so they were able to choose people that would be right for me - I was also able to meet the applicants and everybody could see how I responded to them.
My support workers have now received bespoke training which helps them to deal wth some of my health problems more efficiently.
My parents are now involved in the administration of my service on a day-to-day basis, and have been able to design record sheets that fit my needs, and help my support staff to know what I have been doing with my days.
Mum and Dad organise all my medication for me and put them into boxes, which is a much safer way of having my medications administered. In the past we had quite a lot of problems with medications and sometimes they went missing or not giving.
I am much happier now that I have support staff who know me well, and want to make my life better. I am doing some really interesting things and have started being more vocal, and am much more aware of my environment.
Solo has been brilliant in helping my family to find the right people to join my support team. They have given lots of advise and support, especially with the advertising and organising interviews.
By having the right support workers, with the right level of training, everybody has been able to encourage me to recover some of my lost independence. I feel really proud when I do something to help my support worker, like lifting my leg to have my socks put on, or pushing my arm into a sleeve. These are very tiny achievements but I do enjoy doing things, rather than waiting for somebody to do it for me.
My team gives me every encouragement to participate in every aspect of my life. I am fully involved in all my daily living activities and enjoy going out, meeting new people, and exploring new experiences.
I am beginning to enjoy life again.
I think my Mum and Dad would want to answer this one!
"After exploring the different ways of using a PHB we decided we did not want to take the responsibility of employing the support team meeting the rigorous requirements of employment law, statutory contributions, pensions etc and liked the idea of using a third party organisation to take on this role.
After a lot of internet searching we discovered Solo Support Services, a Nottingham-based third party provider that specialises in supporting people who have a Personal Health Budget.
Solo has taken on the responsibility of being the employer and we are mightily relieved, because we would not have been able to handle these additional burdens.
Even when we were in the early stages of applying for a PHB for Rebecca, Solo Support Services gave us a huge amount of help and advice. The areas where they helped us the most were; negotiating with the CCG, recruitment, budgeting, staff training and employment law.
One of my sisters has been employed by Solo Support to manage my support team. This means that my care and support is now monitored more closelu and on a regular basis, which makes things much safer for me.
In their capacity as third-party provider, Solo maintains Rebecca's budget, which we are able to monitor online at any time.
Solo has maintained a highly professional dialogue and relationship with the CCG and is always willing to neogtiate issues with regards to the budget etc.
We can say quite categorically, that we would not have considered proceading with a PHB, had it not been for the support provided by Solo from the outset. They have been brilliant"
- Been with Solo Support Services since October 2017