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Volume 11 Number 4 July/August 2010
National Epilepsy Week The date of this week was changed to avoid a possible clash with the general election. The fact that there are now so many such events makes it very difficult to generate media interest in any except the most high profile conditions but the Guardian newspaper did feature a special insert on epilepsy on the Friday 18th June. We had information stalls at Whitstable Market on 17th June and at Herne Bay Market on 19th June until the only rain in recent months disrupted our attempts and we took cover in Beach House. We are nevertheless very grateful to Gary Davies the market manager for giving us this opportunity. Joint Epilepsy Council Conference The conference this year will again be held in conjunction with the International League Against Epilepsy UK Chapter at the Hilton Hotel Brighton from 13th to 15th October 2010. Thanks to the Grassroots Though some sessions are highly technical there is much of interest to voluntary groups such as ours.Grant through Kent Community Foundation we shall be able to attend for all three days. We shall either travel daily to Brighton or find cheaper lodgings than those provided at the Hilton Hotel Canterbury High School We are grateful to Canterbury High School for inviting us to their Summerfest on July 15th. We found the day most enjoyable and were able to give information on epilepsy to an audience of students and teachers from many schools in Canterbury who were visiting the event. Epilepsy Research UK Dr Graeme Sills and colleagues, from the University of Liverpool, have been awarded £98,760 over 36 months from the memorial funds to carry out a project entitled Antiepileptic drug transport at the blood-brain barrier .This research may help in understanding why up to 30% of seizures are not controlled by medication. Anti-epileptic drugs (AEDs) need to pass from the bloodstream into the brain in order to protect against seizures. However, the brain is protected against chemicals in the bloodstream by a complex structure known as the blood-brain barrier (BBB). AEDs rely on a variety of mechanisms to help them cross the blood-brain barrier, not all of which are understood. The cells of the BBB have a range of different pumps, which allow important nutrients such as glucose to pass into the brain, but prevent the entry of harmful toxins. It appears that some of these pumps can also transport AEDs. Annual General Meeting The Annual General meeting was held at the Umbrella Centre in Canterbury on Tueday 6th July and was attended by Roger and Monica Kendall, Frances Hill , John Pigeon, Laurence Ward , Melinda Barker , Nicholas Sharman , William Gower and Julian Gower together with the invited guests, Councillor Sally Pickersgill, Sheriff of Canterbury and Deborah Bateson the Lead Commissioner for Neurosciences and Adult Therapies attended to tell us of the latest action of the government for neurology. Monica gave a résumé of the year’s activities which have already been reported in these pages after which Debbie Bateson told us that the code being adopted will leave a lot of the thinking in parliament to become patient based, putting patients at the centre of the decision making, being around those with long term conditions to establish the governments way of thinking and if they are able to report to the government via Roger Kendall who is a member of the Neurosciences Service Improvement Group in this area for carers and he will report this to the committee for them to take on board the thinking of individuals to this committee and report back . It is a very bold step but by listening to peoples’ concerns they may come up with the necessary answers nearer to the patients’ desires. The aim is to treat patients as experts in their field of illness and as partners and not as numbers. The Sheriff said she had learned a great deal more about epilepsy on her visit to our AGM. Roger gave a financial report in which he thanked the many donors including all those shown at the foot of the page. After refreshments Monica vacated the chair but was re-elected there being no other candidates. Roger will continue as Treasurer and we are happy that William Gower has agreed to act as Secretary. Laurence Ward, Melinda Barker and Freda Chapman remain as trustees. The annual report can be downloaded from our website at www.epilepsyhere.org.uk
Equity & Excellence: Liberating the NHS This is the title of a government white paper published in July which proposes radical changes to the way that health and social services are commissioned, delivered and monitored. The stated purpose is to put patients at the heart of the NHS through an information revolution and greater care and control. In the future the coalition government state that patients and carers will have far more clout and choice in the system and as a result the NHS will become more responsive to their needs. Local Involvement Networks (LINks) will become Local Heath Watch and have extended powers in areas such as advocacy, support and complaints. It will be funded and accounted to local authorities. The Strategic Health Authorities and Primary Care Trusts will be abolished and their current powers will be transferred to either a NHS Commissioning Board or for the great majority of NHS patient services to consortia (groups) of GP practices. All GPs will need to become members of these consortia if they wish to hold a registered list of NHS patients. The NHS Commissioning Board will commission the services of dentistry, community pharmacy and primary ophthalmic services. The role of the Care Quality Commission will be strengthened to act as the inspectorate to focus on the levels of safety and quality of providers of health and social care. Monitor will become the economic regulator for the health and social care sectors. This is a very brief summary of a 50+ page document. The full document can be seen at www.dh.gov.uk and the consultation period for comments on the white paper ends on 5th October Such comments should be sent to This e-mail address is being protected from spambots. You need JavaScript enabled to view it
September Meeting
The next meeting of EPILEPSY HERE will be at Canterbury Umbrella Centre on Tuesday 7th September 2010 at 7.30 p.m. John Cotterill of Strode Park Foundation will talk to us about the services there Volume 11 Number 3 May/June 2010
National Epilepsy Week Sunday 13th-Saturday 19th June
Epilepsy HERE is going to have a stall in Whitstable Market on 17 June and Herne Bay Market on 19th June and are hoping to have a stall in If you have any time to help on the stalls on the day or in preparation please could you contact 01227 749095 as a big effort is needed in this special week.If you are involved in any other epilepsy charities their literature and co-operation would help to increase the awareness of epilepsy in the area. We are hoping to produce posters to display so if you can put one up we would like to hear from you, better still if you would like to create a display or poster please do and let us know. We understand that there will be a 16 page supplement in The Guardian on Friday 18th June with input from Epilepsy Action and the Joint Epilepsy Council and that this will be available in booklet form at a number of national and international conferences
Joint Epilepsy Council
A The Epilepsy Nurse Focus Groups Tracey Truscott the Head of Service is setting up a series of focus groups to enable users of this service to comment and evaluate their experiences and thus help to develop this valuable service. The nurses will meet with selected groups of diverse patients in three locations for - Ashford, Annual General Meeting The 11th We will elect the new management committee at the business meeting and ask both the present trustees and any members wishing to join the committee to let us know if they are agreeable to stand for election. There is currently a vacancy on the committee following the resignation of Joy Saunders whom we thank for her past services. We are also currently without a secretary and would be grateful for any member able to undertake these duties. They are largely concerned with keeping the minutes at management meetings up to four times a year and preparing agendas and notices for these meetings. As trustees committee members have the legal responsibility for the running of the charity. Training can be provided, if needed, for elected members. Exhibition Stands May has brought two opportunities for us to raise awareness of our charity both in our area and across
We are grateful to the Kent Community Foundation for approving our application for a Grassroots Grant. We were awarded the sum of £2000 which will cover our office rent this year and purchase an up to date laser printer to produce not only this newsletter but also brochures and posters to publicise our work. It will also provide funds to enable two delegates to attend the joint ILAE/
WE are also grateful to Canterbury City Council for continuing core funding of £750 which in view of rising costs is extremely valuable to us. This is the third year we have received support from the council.
The South East Regional Annual Conference of Attend the umbrella organisation for Hospital and Community Friends was held at
Volume 10 Number 6 November/December 2009
Kent Neurology Group The third meeting of this Group was attended by Roger and Monica on 5th October 2009 together with representatives from Headway, MS Society, MND,PSP and Nicolette Williams -Regional Development Manager - Neurological Alliance (via conference call). The group unanimously agreed that an Affiliated Neurological Alliance should be formed in Kent and a number of jobs were allocated. Roger agreed to try to list as many neurological support groups as possible whilst Monica agreed to act as joint Membership Secretary. The benefit of an alliance which consists of groups rather than individuals is to enable them to improve the treatment of people with neurological conditions by united action. Each of us has to try to attract 2 other groups by the time of the next meeting.
Volume 11 Number 1 January/February 2010
Ronald Cruickshanks Foundation
We are once again indebted to the Ronald Cruickshanks Foundation for a donation of £1000. The foundation has given us regular grants for many years and they have provided the financial lifeblood of our charity. We are particularly grateful for the donation at this time as we realise how badly the income of many charitable foundations has been affected during the recession. National Centre for Young People with Epilepsy On 20th November 2009 Roger was pleased to attend the launch of a new Epilepsy Diary for children and young people. As well as the usual pages for recording type and times of seizures the ring-bound book is crammed with illustrations by professional artists with ample opportunity for interactive contributions by young people. We have already provided copies to the Children's Assessment Centre at Kent and Canterbury Hospital which have been well received and are arranging to provide reference copies in Public Libraries in Thanet. If you would like to receive a copy and are a parent of a child with epilepsy it is available free of charge by calling 01342 832243 ext. 296 or by emailing This e-mail address is being protected from spambots. You need JavaScript enabled to view it
February Meeting Mr.Emkay Magba-Kamara of Kent County Council will be visiting us on Tuesday 2nd February at Canterbury Umbrlella Centre, St. Peter's P;ace, Canterbury at 7.30 p.m. to find out about our members' experiences of service provision by Kent County Council. The county council is responsible for delivery of services that affect our lives in the field of Education, Highways and Social Services so we hope for a good attendance and a lively discussion Membership Fees We hope that as many readers as possible who have not yet paid the small membership fee of £3 will do so as soon as possible because costs of distribution of the newsletter continue to increase. Also if you have internet access and are willing to receive it by e-mail please let us know on This e-mail address is being protected from spambots. You need JavaScript enabled to view it We are grateful to those readers who responded to this invitation last month Christmas Card Sales A big thankyou to all those who volunteered to help with the sale of Christmas Cards at Whitstable, Canterbury and St. Nicholas at Wade. As a result of their efforts we were able to send a total of over £300 to the charities who supplied us with cards. Epilepsy Action, National Society for Epilepsy, Epilepsy Research UK and National Centre for Young People with Epilepsy. We have received letters of thanks from all these charities For an update on Automatic Generic Prescribing see Medication at www.epilepsyhere.org.uk/medication
Epilepsy HERE
Volume11 Number 2 March /April 2010 March Meeting
At the meeting to be held at Will give us a presentation on Fair Trade and answer questions about the need for fairness in dealing with countries in other parts of the world particularly in
Training courses Vision & Values Melinda and Laurence attended the workshop organised by Voluntary Action West Kent on behalf of Kent CAN. They were told of the importance of having a clear organisational vision and a set of values benefits the organisation, particularly in times of change. A strong vision provides a powerful image of a compelling future state. It is important that values are embedded in the organisation; it allows all other systems, processes and behaviours to be aligned in the organisation. A vision is a simple yet, possibly, inspirational statement about the way ahead. A vision is usually created from your own dreams or ideas about the way ahead for a project you are working on, or for your department or even, organisation. The course a statement of the Values of their organisation basis on their strengths ethos they produced a short statement of our organisations values. This was ` we value respect for people with epilepsy within the wide community and scientific understanding’. After some discussion a vision for the organisation was formulated this was: to promote scientific research, remove epilepsy and create acceptance in the wider community. At a second workshop in the afternoon Melinda and Laurence considered the need to manage change.To evolve an organisation must change, there are a range of factors that must be considered. These are shown below.
“Best Value, Better Care – Commissioning Epilepsy Services”
As part of what we hope will be an ongoing process the Department of Health, UCB Pharma and the Joint Epilepsy Council hosted a conference for health professionals with the title “Best Value, Better Care – Commissioning Epilepsy Services” on
Roger and Monica heard Health Minister Professor Ann Keen MP describe how she had treated people with epilepsy as a young nurse. Tracey Truscott our local lead Epilepsy Nurse was able to secure her agreement that it was wrong for specialist nurses to be diverted from their clinics to undertake ward duties .
Later Clinicians and commissioners including Deborah Bateson from Eastern and Coastal Kent PCT and Gerry Clark from West Kent heard Prof. John Duncan speak about epilepsy in adults, Prof Helen Cross about epilepsy in childhood,Mike Kerr about epilepsy and learning difficulty and Prof Ray Tallis about epilepsy in the elderly
SOS Thoughts float like flotsam I'm lost at sea. Driftwood. Jetsam. Epilepsy! Send for the lifeboat. Let it come and find me As I float about. In the sea Underneath a dark sky Get me on to dry land. Then I shall recover. Put my thoughts together. Away from the turbulent water Colin Barnes Nov. 2007
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