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.
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My wife Joan died on Sunday 1st March 2009 at 8.30am.
As she was on the Brain Tissue Register with PDS/Puk I contacted Imperial on the 24 hour phone service, I spoke to Dr David Dexter to prepare for the Courier Service. [ A happy coincidence that he should be on weekend duty as I had had him address the members of the Worcester and District Branch a couple of years earlier.]
As Joan had not been seen by her GP in the fortnight preceeding her death it was necessary for the Paramedics, in attendance following my 999 call, to notify the Police [West Mercia Constabulary]. They completed a Report Form for the Coroner, this form was clearly marked URGENT, making reference to the donor arrangements.
On Monday morning after a check on progress a message was left with the PA for Dr Chris. PYCOCK at Worcestershire Royal Hospital, he is a neurologist with special interest in Parkinson's. Within minutes [at about 8.45am] Chris was in the Mortuary and issued a Death Cert., a call was made to Imperial, by early afternoon a brief message was received at our home "all is well" - code for 'Joan's tissue had been received at Imperial'.
A period of time elapsed and the Research teams' reports were compiled and a copy sent to our G.P.. The language was high flown and very technical. Dr Young suggested that our mutual friend Dr Chris Pycock should be invited to "translate" this screed into "layman's terms, this he did for the benefit of our family.
As a follow up to this Report I made a request to Kieran at P.uk and also to Imperial that it wouly be greatly appreciated by the donor's next of kin to have a suppliment to the main report provided in simple terms to be understood by lay folk.
I gather that this is/has been considered, my family, in particular, would be pleased to learn of the outcome. I have a vested interest on behalf of my sons, because I too am on the Donor Register.
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