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It was a major loss to the voluntary neurological sector when Alan Clark died in October.
I first met Alan in March 2003. I had recently started as the Patient Advice and Liaison Service (PALS) Manager at The Walton Centre. I knew Maureen Kelly, the Manager of the Glaxo Centre (as it was called then). I asked her what support groups were lacking that we could hold meetings for during Brain Awareness Week in March 2003. Maureen suggested that Brain Tumour and Brain Haemorrhage were lacking local support.
New Support Group
Alan’s wife Sally had had a Brain Haemorrhage and he attended the latter meeting, addressed by the then Neurosurgical Registrar Mohsen Javadpour. There was widespread enthusiasm for a support group from the 33 people present, not least from Alan. He needed support himself but was anxious to help others where he could.
Alan and another attendee listen to the discussion at a support group meeting.
The group held quarterly meetings for four years. Sometimes we had a speaker. Other times we just sat and chatted informally. In addition, Alan and other members of the Brain Haemorrhage Support Group had an input into the Patient Information leaflet produced by the Walton Centre; established a Milestones Diary for people newly treated for a Brain Haemorrhage and relatives to record their ‘patient journey’; and were instrumental in getting established the role of a Clinical Nurse Specialist post for people who had a brain haemorrhage.
Leading members of the new Brain Haemorrhage Support Group charity with the logo designed by Paul.
Eventually, Alan and other members decided to set up a local charity and run it themselves. I helped them set up the charity; still sent out the invites for meetings; sign-posted newly diagnosed people to the charity; and went to all the meetings – and I don’t think Alan missed one of them!
One of the new initiatives they took was to speak to nurses on the neurosurgical wards at The Walton Centre to make them aware of the needs of people who have had a Brain Haemorrhage – and of the relatives.
The Lord Mayor of Liverpool Steve Rotheram and his Consort (wife Sandra) pictured with key members of the Brain Haemorrhage Support Group. Steve donated £1,000 towards their work from the Lord Mayor’s Charity. (On the left end is Dr Sasha Niven, Consultant Interventional NeuroRadiologist who was addressing the meeting about treatment of a ruptured brain aneurysm by coiling.)
Road to Recovery
From the support group meetings, the needs of people affected by brain haemorrhage quickly emerged. I therefore designed a short course of information sessions for people recently treated for a brain haemorrhage entitled Road to Recovery – a deliberately positive name. With the input initially from Walton Centre Nurse Specialist Sharon McLoughlin and then Cathy Stoneley, several courses were run and dozens of people benefitted. Alan spoke on each course about being a relative of someone who had had a brain haemorrhage.
Mr Javadpour, speaking at the Road to Recovery for people recently treated for a brain haemorrhage and their relatives.
Alan staffed the Neurosupport Patient Information Desk one day a week for many years. It was adjacent to the PALS Office and we chatted often – only differing when we talked football!
I retired in June 2010 from The Walton Centre. I was aware there was no Branch of Headway in Liverpool and Alan and I set about organising a new Branch. Alan was the mainstay of the Branch for five years before his health deteriorated.
Alan was a regular for over 20 years at the Glaxo Neurological Centre, Neurosupport and latterly The Brain Charity. I don’t know much detail about his work on the Council of Governors (until just a couple of months ago) at The Walton Centre NHS Foundation Trust but I can state with certainty that he will have approached the role with the same tenacity, commitment and compassion that he showed for so many years to people affected by neurological conditions.
Sally, who died three years ago, never came to any meetings. But I would meet her occasionally at church and she would always comment about the extent of Alan’s voluntary activities! He really has earned his rest in peace.