Looking back over the past year, the theme seems to have been consolidation. For the first time since we started life six years ago we haven’t started any new projects during the year. So how come we’ve been slogging away non-stop all year (instead of enjoying our retirement), to the frustration of our families? One thing it’s shown us is that merely sustaining and maintaining Strokewatch is the hardest and most unremitting of all our activities. Like painting the Forth Bridge it’s a continuous and unglamorous struggle.

Every AGM I tell you what Strokewatch does. This is the list for the last year:

• Quarterly Newsletter
• Website
• Production and distribution of information leaflets and booklets e.g. through eleven Strokewatch bookcases
• Six Jubilee Stroke Days – organising them, running them, writing reports
• Feedback forms and other user questionnaires (e.g. for Carer and Lifestyle Handbooks)
• Participation in stroke service meetings
• Talks for conferences and training programmes
• Day-to-day enquiries and requests for advice and information – local, national, international
• Membership database
• Keeping the office going
• Attending local community and NHS open days (display stand)
• Grant applications and other ongoing fund-raising.

This is a long list, but each item is a hefty job in itself. How many of the people who have observed our goings-on over the last six years realise that the bulk of the donkey work is carried out by only four people? They’re all pensioners, they’re all stroke survivors; and they’re all walking textbooks of multiple pathology. You name it – we’ve had it or we’ve got it. Leaving aside strokes, among just the four of us we sport an interesting back condition, an interesting eye condition, an interesting blood condition (i.e. acquired Factor 8 inhibitors), TIAs, leg ulcers, panic attacks, hip replacements, cataract surgery – and so on ad infinitum.

You’ll gather that my report this year is different. The emphasis is on the very demanding reality of running a small charity. It’s also my personal swansong, as I will be leaving the area in the near future and am therefore resigning from Strokewatch, as from today! (Fat chance.)

You could say that my resignation is ‘not before time’. Thinking about what to say in this report, I realised that next year, 2005, it will be ten years since I had a stroke. A whole decade! It’s just as real in my memory as it was ten years ago but as for contributing the patient, survivor, user perspective – surely our heyday is over! If the stroke service wants to learn from the user/carer perspective it should surely be current or more recent patients and carers who provide it, not old hands like us, banging on about our essentially historical experiences. Get real, Strokewatch! It’s old hat! Times have changed!

So I think it is time for Strokewatch to review its position. Are the twelve things on that list essential? If so, how can Strokewatch keep them all going? Or has it done its main job? Is it time to narrow the focus and do fewer things – and if so, which of the twelve are the essentials? Should the stroke service be doing some of the things Strokewatch has been doing – e.g. gathering patient/carer feedback? Who really benefits from what we do? Most crucial of all, what is the best use of the remaining energies of the three who will be left after I go? One thing is certain, they can’t go on with the overload they have managed over the last year. Another thing – whatever else we have achieved, we have failed dismally to attract new people to join the Strokewatch Committee! In fact, we might even have put them off, one way or another. Surely this must change.

So, come on, people! Let us have your views, ideas and suggestions! Or do we just let this peculiar little success-story charity fizzle out – the victim of its own exertions?

Dilys Page
16 June 2004