Uncovering brain donation

There's no substitute for human brain tissue – studying it has helped develop the treatments we have for Parkinson's today. And human brain tissue still has a vital role to play if we are to unlock the secrets of Parkinson's that will lead us to a cure.

You can take a virtual trip inside the Parkinson's UK Brain Bank by reading Zoe Williams' article in the Guardian today. Zoe visited the brain bank to watch neuropathologist Professor Steve Gentleman dissect a donated brain and get an insight into how much we have to learn from these precious organs.

For brain tissue to be used in research it needs to be collected within 48 hours of death. But, as John Carvel wrote about in the Guardian earlier this month, the donation process is becoming increasingly hampered by NHS cuts and red tape.

And we know that our brain bank is facing the same problems.

Removing brain tissue for research is not part of a mortuary technician's regular job. We depend on their goodwill and, while most do their best, staff cuts and confusion are causing delays that mean tissue cannot be collected within the crucial 48 hour window.

So, the news this week that the Government are taking steps to address these problems comes in the nick of time.

Under the new plans, the Medical Research Council will now have an extra £3million to support the UK brain bank network, which connects all the UK brain banks for the benefit of donors and researchers.

Crucially, this includes £500,000 a year to help meet the costs of collecting brain tissue through the NHS, to smooth the pathway to donation and prevent precious tissue going to waste.

This funding boost will not solve all the problems of brain donation, but it's an important step in the right direction.

We'd like to hear about your experiences of brain donation – good or bad. Please comment below or email us on research@parkinsons.org.uk.

An end to the 'revolving door' of assessments for people with Parkinson's

The Derby Telegraph has recently highlighted the case of one of our members, Robin Mitchell, who has been judged fit to return to work in 18 months. This is despite the fact that Robin had to retire from his position as a data administrator in 2008 because of his Parkinson's. Something which his former boss says was entirely necessary.

Robin now faces being re-tested to make sure he can still receive Employment and Support Allowance (ESA), after already having been assessed in 2009 and 2010. In addition, he has now been told that his ESA will become income-related at the end of April 2012, which could mean he will only receive around half the amount he currently does.

This follows a recent article in the Daily Mirror, which shows that across the country 440 people with Parkinson's will have to undergo repeated assessments for ESA, as Robin has done.

The information came from a parliamentary question, asked by the Labour MP, Tom Greatrex, who has been championing the cause of one of his constituents who has Parkinson's.

We need an end to the revolving door of assessments that people with Parkinson's are subjected to. Instead, the government need to give people, like Robin, the support they need.

We are working to influence the benefits system to ensure that it takes into account the needs of people with a long term, fluctuating conditions such as Parkinson's.

Have you been assessed as fit for work, when you know your Parkinson's prevents you from doing so? Or do you care for someone with Parkinson's and work alongside?

Tell us your stories by emailing campaigns@parkinsons.org.uk.

Supporting Brain Awareness Week

We're proud to be supporting Brain Awareness Week - the global campaign to raise awareness of the progress and benefits of brain research - which starts today (12-18 March).

Your brain is amazing. It contains around 100 billion nerve cells which connect and talk to each other through 100 trillion synapses. This 3lb jelly-like mass inside your head is responsible for controlling almost everything you do - from walking and talking, to storing memories and creating our thoughts and feelings.

But in people with Parkinson's, the nerve cells that produce dopamine stop working and die. These nerve cells, found in the part of the brain that controls movement, are lost gradually, and it's only after about 70% of the nerve cells have died that the symptoms of Parkinson's begin to appear.

We don't know why this happens or crucially how to prevent it. But Parkinson's UK-funded research is leading the way to unravelling the secret world of the Parkinson's brain.

Every March, in Brain Awareness Week, hundreds of universities, charities and research organisations around the world join forces to celebrate the brain through events for people of all ages. And there are events happening up and down the UK this week including open days at neuroscience labs, exhibitions, lectures and workshops.

Our director of research and innovation, Dr Kieran Breen, will be speaking about the creative talents of people with Parkinson's at 'Arts for the brain' - at the Midlands Art Centre in Birmingham this Thursday, 15 March.

And don't forget that Parkinson's Awareness Week is also fast approaching (16-22 April) and we'll be holding events all around the UK and talking about our work to find a cure. We hope to see you there!

Parkinson's drug shortages: an update

You may have seen some recent news articles concerning shortages of Parkinson's drugsSimemet and Azilect. We have been working to clarify the situation by contacting the manufacturers so we can reassure people who may be affected.

Many of you will remember the global shortage of Sinemet in 2010 and the fantastic support that so many people with Parkinson's and their families and carers gave to our campaign.

We have been monitoring the situation since then and have recently been made aware that some people have had problems getting hold of half Sinemet (62.5mg or 12.5/50mg).

We contacted MSD (who manufacture Sinemet) who confirmed there is no shortage but there is a back-log of orders, which may cause some disruption until June 2012. Pharmacists who are having trouble fulfilling orders of Sinemet should contact MSD customer services on 01992 462094.

Azilect was also mentioned as being one of the drugs in short supply. The manufacturer, Lundbeck/ Teva, has confirmed there is plenty of stock but it is held centrally in order to regulate the supply.

Pharmacists are rationed to a certain number packets at a time but this can be increased, if the number of prescriptions they receive increases.

Pharmacists who require more than this number need to contact their Alliance Healthcare Service Centre or Lundbeck customer services on 01908 462094.

We will be monitoring the supply of all Parkinson's drugs carefully over the coming months and will make sure we keep everyone updated. We are committed to making sure people with Parkinson’s have access to the medication they need.

If you've been affected by drug shortages, tell our campaigns team about your experiences on campaigns@parkinsons.org.uk or 020 7963 9349.