About me

My name is Kenny and I am 53 years old. I was 50 when I got a diagnosis of Vascular Dementia. I am a partner, a grandfather, a qualified teacher, a musician, a churchgoer, a member of a marching flute band and a former Chief Executive of a charity. After my diagnosis I felt like an invalid, and I now consider myself disabled. Thanks to Self-Directed Support, I was able to get the help I needed to regain my independence. The process was more difficult than it should have been, so I am sharing my story to help those who find themselves in my situation. 

My partner Davy cares deeply, but he is very overprotective and together we struggle with the fact that I can't do the things that I used to do on my own. I used to run an organisation and make household decisions. I was in charge of the finances. I can't do that now. I can't read a book or follow a television programme. I just don't understand, and sometimes I can't understand why I can't understand. After the initial shock, I wanted to go back to being who I had been. I wanted to be back doing everything that I could do before. I wanted to be as involved as I always had been.  

Kenny talking about Self Directed Support to SDWG members
Kenny talking about Self Directed Support to SDWG members

"Sometimes I can't understand why I can't understand"

Why we chose Self Directed Support

Self Directed Support (SDS) is a range of options that allows you to organise the support you need to allow you to be more independent and get what you want out of life. Through my job, I had experience of working with the health and social care partnership and this gave me an insight into the system. The idea of Self Directed Support is that it is different from having social workers come in and start telling you what you need and how they are going to provide it. That wasn't going to work for us or our situation. 

We wanted Self Directed Support to engage a personal assistant (PA) who was known to us, and of our choosing, to allow Davy to go back to work. Davy left his job because his employer was inflexible about him visiting me when I was in hospital. I had to retire from my job and we didn't have any income, so we were relying on Universal Credit.  We also wanted support so we could have some time, space  and an opportunity for me to regain some independence. 

What happened next 

We faced some resistance when we asked for Self Directed Support, I think that social work thought it was risky for them, but we considered it to be in our best interests. However we had excellent support from the Dementia Nurse and Occupational Therapist who came to the social work meeting to plead our case. We had to go through several of those meetings. We were also very fortunate that our local independent councillor got involved. He managed to get the budget backdated because of the length of time that we had waited for it. I was also supported by the local advocacy organisation, and Davy was supported by a friend, who acted as his advocate.

When you become a PA's legal employer, you generally have responsibility for payroll, National Insurance and pension contributions, and any disciplinary matters. But there are other options and organisations that can help with this.  I use an organisation called Take Control. I pay them a fee from the Self Directed Support budget, and they employ Margaret, my PA, through a third party agreement which means they pick up the responsibilities. This works a treat. 

Why Self Directed Support works for me

Self Directed Support has given me some space, freedom and care. It has also given me Margaret. We knew her before she was my PA, she was a friend of Davys from work. She drives me places, we get out and about, going to a cafe for a coffee for example. I go to the gym and swimming twice a week, only because Margaret is able to take me in the car. Social work wanted someone to come and take me on the bus because I have a bus pass, but I can't walk very far. I quite like travelling on the bus but that wouldn't have worked for me. I also get quite anxious travelling.

Margaret gives me support anywhere I am going as well as at home as Davy doesn't like me being at home alone as I have epilepsy. I also have someone who knows me, who is looking out for me, and who offers support to me and Davy. Margaret is in our house every day, she makes us dinner, does the shopping, and helps with the household tasks. 

Margaret gives me confidence. She lets me do things by myself. Davy tries to let me do things by myself, but he sometimes struggles because of concerns he has for my capacity and capabilities, due to my various conditions. Margaret has also given me hope that I might become who I want to be, which is me. She is brilliant! 

My advice to others

I would urge other people living with dementia to consider Self Directed Support and have a look at what it could offer you. It is another means of becoming independent. Without that budget, I wouldn't be able to do so many things because I wouldn't be able to get out of the house. Given what we know now, it was harder to get Self Directed Support than it should have been for us. If you find yourself in a similar situation, you should get in touch with your local councillor and Dementia Advisor. 

"Self Directed Support can be for you. It should allow you to do what you want to do, rather than just get a grabrail for your shower and a handrail for your stairs."

You can find out more about Self Directed Support here