People with Parkinson's can have their say in Parliament

The workings of Parliament remain a mystery to most, but the launch of a new inquiry means some people with Parkinson's will soon have the chance to influence politicians face-to-face.

Our Parliamentary Advisor, Caroline Weston, has been working hard to help set up the inquiry which will investigate whether NHS Continuing Care – which provides funded care for those with severe health needs – is working for people with Parkinson's.

It's my job to try and make sure our politicians are considering the needs of people with Parkinson's – a challenging task to say the least. But we're lucky enough to be able to work with a group of politicians who meet specifically to talk about Parkinson's and the issues around it.

All Party Parliamentary Groups

Baroness Gale
All Party Parliamentary Groups, or APPGs, are informal groups of MPs and peers who meet up to discuss and champion lots of different issues ranging from Parkinson's to Albania to zoos.

The APPG on Parkinson's is run by the politicians, but we provide them with information and opportunities to raise awareness of Parkinson's.

Chaired by Baroness Gale (pictured right), whose father had Parkinson's, the group has more than 40 members and many have their own personal connection to the condition.

When we met with the group last year, we told them about how getting access to this care is a real issue for people with Parkinson's – in fact it's the third most common reason that people call our helpline.

Inquiry for people with Parkinson's

The APPG agreed that this situation is not acceptable, so they decided to hold an inquiry on the issue for people with Parkinson's, and how to make the current system for providing NHS Continuing Care work better for them.

When the inquiry launches next month, we'll be asking people with Parkinson's to tell us about their experiences of NHS Continuing Care and how they think it could be improved. Some people will even have the chance to go to Parliament and talk to the politicians directly.

Keep an eye on our website in early March when we'll tell you how you can get involved.

MP talks benefits with our Bolton Branch

When Allan Martin heard about the impending changes to the Disability Living Allowance (DLA) benefit to Personal Independence Payment (PIP), like many people with Parkinson's, he was faced with serious concerns about his future.  
Allan Martin from our Bolton Branch, with Julie Hilling MP (middle)

So when he received an email from the Parkinson's UK Campaigns Network calling on people with Parkinson's to email their MPs about the welfare reforms, Allan jumped at the chance.

I'd heard that the Government - in all its wisdom - planned to make even more cuts to our benefits and I was really worried.

People with Parkinson's have a condition that will never improve - I just couldn't see any point in sending us for another awful round of interviews to see if we're entitled to benefits, when our Parkinson's can only get worse.

Under the new PIP test, if you can walk more than 20 metres you could well lose your money. But the way I see it is if you can walk 20 metres, you've got to walk 20 metres back - something a lot of us with Parkinson's would find very difficult on a bad day.

Meeting my MP

So when I got an email from Parkinson's UK asking us to write to our MPs I decided I had nothing to lose. I wanted to find out from the horse's mouth exactly what was going on, so I emailed my Labour MP, Julie Hilling. I was quite surprised when Julie's secretary got in touch and wanted to arrange a meeting.

I told the committee of the Bolton Branch, and they hired a room for us at the Bolton Arena so other people could come and ask questions too. On the day, there was a really good turnout of about 25 people and the Bolton Evening News even came along to take photos. Julie did a Q&A session with us, talking in-depth about the changes and finding out what it would mean to us if we lost our benefits.

The whole thing seemed to have a real impact on her. People have the wrong idea about Parkinson's - they think it's just a tremor but it's so much more than that. That day she met some people who were really poorly with Parkinson's and heard about how it affects them. This prompted her to make a promise that she would follow up on our concerns directly with the relevant Minister.

After talking to Julie I felt more secure because she listened to our concerns and explained things as clearly as she could. I really believe we have to take every chance to speak up abut what is wrong with the system or we'll end up letting the politicians walk all over us. I feel so indebted to the people out there helping us like Julie and the people involved with Parkinson's UK.

For more information on the benefit changes see If you have any concerns or questions, please call the Parkinson's UK helpline 0808 800 0303.