I’m Shana and I’ve been a Trustee at Possability People for 6 years now.
I was finally diagnosed with Multiple Sclerosis in 2008. I was running my own business at the time, but as I became increasingly ill I had to sell the business as I couldn’t cope either mentally or physically. I was then signed off work permanently, my husband left and my life was turned completely upside down.
From the moment I was diagnosed Possability People became a massively important part of my life.
When I was signed off work, the Job Centre recommended I came here to the Disability Advice Centre to help me sort out all of my benefits. I met with a benefits advisor and she was amazing. She sat with me for hours and helped me with all the awful forms, whilst keeping my spirits up and making me laugh.
I was also set up with a Direct Payment. Employing PAs and managing your own social care can be pretty daunting, but the Direct Payment Advisors here gave me all the help, encouragement and support I needed. And I used our Payroll Service from the outset, which took all the pressure off in terms of having to deal with tax and Inland Revenue.
Possability People also gave me lots of opportunities for voluntary work. I was told about all of the projects that were running and the volunteer opportunities available. It looked really interesting and I started off by volunteering on the accessible city guide reviewing local bars, restaurants and hotels for accessibility.
I then started going along to The Get Involved Project, the Peer Support Group and helped develop the PA noticeboard. And also started doing media and press interviews about the organisation, and doing PR work like giving speeches at functions and events.
Through my volunteering roles I really regained my confidence and began to feel like I did actually have something worthwhile to offer. This eventually led to me becoming a Trustee here.
As I use the Direct Payment and Payroll Service, I joint-chair our quarterly stakeholders personalisation committee along with Sophie & Maddy. That committee brings us together with council social services departments, commissioners and other 3rd sector organisations in the city. We talk through and iron out practical and logistical problems within self directed support. And as Trustees we then feed back to the rest of the Board about the service and discuss it’s achievements and ideas for overcoming challenges.
Through getting involved with the GIG I became really interested in improving lives for disabled people. This gave me a spring board to other work, and I am now heavily involved in political campaigning on a national and European level around health, social care, disability and welfare. This means that I can take issues effecting disabled people locally, such as benefit cuts and unfair benefit assessments and highlight these issues within parliament and the media.
There are many campaigns I have set out on and haven’t won, but the wins feel great and make it all worth it! Some national wins include getting the walking descriptors changed on PIP so instead of just asking ‘can you walk 20 metres?’ the legislation now includes the words ‘“safely … to an acceptable standard …repeatedly … and … in a reasonable time period”.
I got fluctuating use of social care packages for fluctuating health conditions into the recommendations of the new social care act. And earlier this year I was part of the national campaign which defeated the proposed changes to the way use of aids was assessed for PIP. Locally I got a second MS Nurse funded for Brighton & Hove, got an accessible toilet put into the sexual health clinic, got southern water to lift the hosepipe ban for all disabled people before they killed my garden, and I’ve finally got all secondary health care nhs buildings to replace the foot-pedal bins in their accessible toilets. I’m still working on the main hospitals.
Over the next few weeks I’ll be part of the local social workers and occupational therapist training in the new Social Care Act, giving a speech at the European Rehabilitation in MS Conference, then giving 2 speeches on sex & identity and bladder and bowels issues at MS Life. Then I’m at the Conservative Party Conference speaking on the panel with the Social Care Alliance, and then in Parliament giving a talk at the Continence Roundtable. And then I’m going to sleep for a month.
In 2011 I got the UK MS Society ‘Campaigner of the Year Award, in 2012 the ‘Olympic Community Champion Award’, 2015 the European Patient Advocate Award and this year I got National MS ‘Inspiration of the Year’.