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Annual Report for year ended 31st March 2010

of Epilepsy HERE (Help, Education and Research for Epilepsy)

The charity employs a working name of Epilepsy HERE an unincorporated association governed by a constitution adopted

on 7th December 1999 Registered by the Charity Commission of England & Wales on 29 January 2000

The registered Number of the Charity is 10791072

The principal address of the charity is Beach House, Beach Street, Herne Bay, Kent CT6 5PT

During the year the following persons appointed at the Annual General Meeting on 3rd June 2008 have served as trustees Monica Elizabeth Kendall — Chairperson Margaret Barnes — Secretary (until October 2009) Roger Kendall A.C.I.B. — Treasurer Freda Chapman Joy Saunders (resigned November 2009) Melinda Barker Laurence Ward No other person has acted as a Trustee or Custodian Trustee The recruitment of all trustees is by nomination to the Annual General Meeting. Calls for nominations are sent to all members together with the notice of the meeting. A Management Committee consisting of a Chair, Secretary and Treasurer and up to four other members governs the charity Bankers: Co-operative Bank PLC Skelmersdale Merseyside Nationwide Building Society, Mortimer Street, Herne Bay, Kent The charity has extensive powers of ownership and investment in accordance with the constitution. The objects of the charity are to advance the education of the public within the area of East Kent (being the local authority areas of Swale, Canterbury, Thanet, Dover, Ashford and Shepway) on all matters relating to epilepsy and related neurological conditions and to relieve those persons who have epilepsy and their families and carers so that their condition may be improved. Supported by

Supported by

The Ronald Cruickshanks Foundation

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11th Annual General Meeting to be held at Canterbury Umbrella Centre In the presence of Cllr. Sally Pickersgill Sheriff of Canterbury at St. Peter’s Place, Canterbury

On Tuesday 6th July 2010

7.20 p.m. Assembly 7.25 p.m. Introduction and welcome to the Sheriff of Canterbury by Chairperson Monica

Kendall. 7.30 pm Introduction and welcome to Deborah Bateson of Eastern and Coastal Kent PCT

followed by a talk about developments in neurosciences. 8.00 p.m. Vote of thanks to our Guests . 8.10 p.m. Adoption of the Minutes of the General Meeting held on 2nd June 2009. Chairman’s Report. Treasurer’s Report and proposal for adoption of accounts. Election of Chairman. Election of Treasurer. Election of Secretary. Election of Management Committee Member(s)

8.30 p.m. Raffle and Refreshments. 9.00 p.m. Close .

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Minutes of the Annual General Meeting held at Canterbury Umbrella Center on Tuesday 2nd June 2009 at 7.30 p.m.

in the presence of the Lord Mayor of Canterbury Councillor Dr. Harry Cragg

Present: Melinda Barker, Freda Chapman, Frances Hill, John Pigeon, Mr. & Mrs. Kevin Regan, Nicholas Sharman, Roger Kendall, Monica Kendall Margaret Barnes, Joy Saunders and Roger Saunders In attendance Cllr. Cllr. Dr. Harry Cragg and Dr Stephen Pollock Apologies were received from Roger Gale MP and three members 1. The Lord Mayor of Canterbury was welcomed by the Chairperson, Monica Kendall 2. The speaker Dr. Stephen Pollock from East Kent Hospitals’ University Foundation Trust. was

welcomed and invited to speak. He gave an account of the treatment for people with epilepsy in East Kent and of how it had improved in recent years.

3. The minutes of the Annual General Meeting held in September 2008 having been circulated were accepted as a true record. Proposed Mr. K. Regan Seconded Margaret Barnes

4. Mrs. Monica Kendall commented on her report as Chairperson which had been circulated 5. Mr. Roger Kendall commented on his report as Treasurer which had been circulated.

The accounts were accepted by the meeting. Proposed Mrs. Joy Saunders Seconded Monica Kendall

6. Mr. Kevin Regan took the chair for the election of the Management Committee and Officers. Mrs. Monica Kendall was re-elected as Chairperson: Proposed Nicholas Sharman and Seconded by Roger Saunders There were no nominations for the post of secretary since Mrs. Margaret Barnes wished to retire from that position. Mr. Roger Kendall was re-elected as Treasurer: Proposed Monica Kendall Seconded by Roger Saunders Freda Chapman, Joy Saunders and Margaret Bares were re-elected by a show of hands and Laurence Ward and Melinda Barker were duly nominated and elected on a show of hands Mrs. Margaret Barnes proposed a vote of thanks to our guests and the meeting closed with refreshments and a raffle.

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Chairman's Report

I would like to welcome all of you all to our 11th Annual General Meeting, especially The Sheriff of Canterbury Ms Sally Pickersgill and another distinguished guest the Commissioner for Neurosciences for this area Ms Deborah Bateson. We are a group of volunteers in the South East helping those with epilepsy and their carers be they family members or paid workers in a care home. Many of the homes we visit to give training have patients with epilepsy and some with other problems. We would like to offer help but most of all hope. We help individuals to learn more about epilepsy. One of the ways is to hold a helpdesk at Kent & Canterbury Hospital and at Herne Bay hospital when there is an epilepsy clinic being held where there are brochures on different aspects of epilepsy on show and for people to take away with them which are regularly updated. We direct individuals to websites if they are able to access through the internet and continuously advance our own knowledge on the subject. We are still members of other organisations as a source for information. The help desks are run by the National Society for epilepsy which is one of the largest epilepsy research organisations in England and are manned by members of this group, Monica, Roger and Stephanie Orridge over in Dover. Last year Dr Stephen Pollock the lead neurologist in the East Kent University Foundation Hospital Trust attended the tenth annual general meeting and kindly talked about Epilepsy in the community Since last April a lot has happened and one of the most important things has been the Government of the time wishing to enable pharmacists to hand out generic drugs to patients because of the costs of drugs made by the originators of the drugs. As some of you may already be aware, from January 2010 new dispensing regulations were to be in place throughout the UK. Pharmacists would have been expected to change the brand of drug named on a prescription and replace it with a different generic brand. This is as part of the Department of Health’s 2009 Pharmaceutical Price Regulation Scheme agreement. This agreement seeks to make ‘generic substitution’ legal. This would mean a pharmacist could replace more expensive branded versions of drugs for cheaper generic versions. They would not have to consult with either the patient or the doctor or nurse who wrote the prescription. The National Health Service estimated this would save £40 million a year. Ourselves and many other organisations have been very active in the pursuit of what is right for the patient. Campaigning groups were able to show their feelings on the matter on a website especially prepared for this purpose and as a result of representations made by groups including the Joint Epilepsy Council and the Royal Society of Pharmacists the change has yet to be made. During the past year we were invited by Tracey Truscott the head of the epilepsy nurse service to attend the Kent Show along with other groups in the area in the NHS marquee at the Kent Showground at Detling on Friday 17th July from 12.30 p.m. it was an ideal opportunity to let people know of the work being done in Kent and to give out information about epilepsy. In March we were able to meet up agan with Tracey and our colleagues from Epilepsy Action in Ashford to discuss the formation of focus groups for the epilepsy nursing service. A Neurosciences Services Improvement group was set up and if anyone is interested in giving ideas for this please talk to Roger after the meeting. Similarly we are members of the Joint Epilepsy Council and if anyone feels it would be helpful to know more about this Roger can give an overview of what is happening there. We have also taken an active part in the setting up of the Kent & Medway Neurological Alliance.

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Through our membership of the Joint Epilepsy Council we still attend the meetings of the All-Party Parliamentary Group on Epilepsy in Committee Rooms which may be allocated for the purpose at the House of Lords. Roger and Monica were able to attend these meetings where speakers from the government were amongst those who addressed members with an interest in epilepsy but some meetings needed to be re-arranged because of the election this year. Nurses for Epilepsy and other groups of the Joint Epilepsy Council attended also. We also joined with JEC members in a joint JEC/ ILAE Conference in Sheffield in the autumn. We attended and had an information stand at the "Better Care" day held in London in February where Ann Keen the then Minister of State for Health and a former nurse was amongst many informative speakers.

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We attended a conference at the National Young Persons Centre for Epilepsy at Lingfield which has been greatly improved recently. Money had been donated so that they were able to buy new scanning equipment. A new diary for children was launched by them and if anyone wishes to receive a copy please contact us and we are able to send one on or if they attend the Childrens’ Assessment Centre at Kent & Canterbury Hospital they can get one there. The Lingfield Centre is a village devoted to children and young people with epilepsy, as well as a research institute there are special rooms and equipment to monitor children with the epilepsies, their progress, their activities, their seizures their education and to keep the children in an environment where help can be given to them immediately. The aim of the meeting was to search for ways in which services for children can be improved. Many interested parties came together to talk about the epilepsies in Children and Adolescence and were given the opportunity to be shown around the buildings with the new and latest equipment they have been given. It is a very state of the arts building where not only the children may stay but the parents and siblings can stay to be on hand to make it as normal a process as possible for them without feeling excluded. Observations made by not just the parents but the clinicians also. The website has been greatly improved and expanded through the assistance of Kent CAN. The site gives access to useful information not only written by us but also through links to other reliable sites. There is a search panel available to show the view of these websites on particular issues. We have been in contact with many Care Homes which has enabled us to give epilepsy awareness training to the staff employed by them. This is a continuing programme originally funded by the Primary Care rust. Our friend Lynne Sheldon from Gravesend Epilepsy Network was awarded an MBE in the Honours List this year for her outstanding work in the community in regard to epilepsy Roger will give a resume of those who throughout the last year have given grants and donations to the Charity without their generosity we would be unable to continue.

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Treasurer's Report

A current account is held at Co-operative Bank PLC Skelmersdale Merseyside and a deposit account at Nationwide Building Society, Mortimer Street, Herne Bay, Kent both accounts require the signature of two officers for withdrawals and all major expenditure is sanctioned prior to disbursement by the Management Committee. The financial position of the charity remains satisfactory due largely to contributions made by the Ronald Cruickshanks Foundation of £1000, Canterbury City Council of £515 and Whitstable and Herne Bay Lions of £400. Fundraising has proved more difficult than in previous years but we are grateful to sponsorship from runners in the Whitstable 10k, Mount Ephraim 10k and British 10k London . We are very grateful to all our donors and sponsors. The donation from the Lions Club has been utilized in the production and distribution of our newsletter. We aim to produce and distribute this every other month and send it to past and present members, local politicians, the media and health professionals in East Kent. This requires the production and distribution of about 400 copies for each edition. Fortunately about 50 are sent by e-mail and this is increasing. To limit costs the production and distribution is undertaken by volunteers. The donation from the City Council has enabled us to continue membership of the Joint Epilepsy Council and attend the joint Annual Conference of ILAE/JEC. At the end of the year we were granted £2000 as a Grassroots Grant through Kent Community Foundation and this sum will be received in the year ending 31st March 2011. The accounts reflect the costs of office space at Beach House, Beach Street, Herne Bay. These are subsidised by Canterbury City Council, which also fully remit the uniform business rate. A formal lease of five years has now been secured with a notice period of six months without penalty. The property is included in the Herne Bay regeneration plan and an alternative may have to be sought in a year or two. The relocation has enabled us to obtain regular volunteer assistance and we are grateful for the help Laurence Ward has given. The members donated refreshments at meetings and raffle prizes. Meetings have been held at Canterbury Umbrella Centre at a nominal cost for which we are most grateful. The Charity is a member of Attend the successor organisation to Friends of Hospital and Community Friends. The subscription incorporates public liability insurance for our charity. We are members of Canterbury District Community Association, CADVAS, CASE Kent ,Kent CAN , the NCVO (National Council for Voluntary Organisations) and the International Alliance for Patient Organisations (IAPO) During the year we supported the formation of Kent and Medway Neurological Alliance (KAMNA).

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EPILEPSY HERE-Receipts and Payments

General Fund (1) RECEIPTS

Donations (3) 1,180 1,317 Canterbury City Council Grant(2) 515 500 Gift Aid Tax Refund 47 76 Grants — Charities and Trusts (2) 1,000 1,000 Raffle Proceeds 37 78 Interest on Investments 7 98 Sale of T-shirts Membership Fees 63 55

Fund-raising British 10k runs 295 3,144 835 3,959 EXPENDITURE

Direct Charitable Expenditure Annual Dinner 50 Rent Meeting Room 118 100 CR8 Checks 16 Stationery & books 37 149 Printing Inks & Toner 296 301 Stamps 331 27 Administrative expenses 30 66 Fundraising Expenses 53 153 Property & liability Insurance (5) 364 336 Membership Fees(4) 375 239 Office Rent, Heat & light 1000 1,000 Conference Fees and Expenses 558 439 British 10k London Debenture 176 Sundries 17 Telephone/Intemet 434 438 Travel 236 724

Total 3905 4,216

Deficit General Fund -203 -253

Restricted Funds

Donation Whitstable & Herne Bay Lions -Newsletter (3) 400 400 Newsletter Stationery, Printing Ink & Stamps Grant Henry Smith Foundation 1000 Computer Hardware 510 Computer Software 462 Administration 28 Total restricted funds 1400 1400 0 External Training Fund 559 Training publications Administration Total Income 3,144 5,363 Total Expenciture 3925 6,886

Overall deficit -761 -1,527

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Balance Sheet

Epilepsy HERE £ £

Monetary Assets.

2010

2009

Balances held at Nationwide Building Society (6)

Balance at 1st April 2009 1694 1700

Received 1 45 Paid 0 51

Balance at 31st March 2010 1695 1694

Co-operative bank Ltd Account (1)

Balance at 1st April 2009 5017 6548.

Receipts plus 3143 5228 Payments 3409 6667 Balance at 31st March 2010 4751 3409 5109 Plu debtor 76 Less creditor 491 167 4259 5017

Petty cash 10 Balance General Fund 2904 3059 Balance Designated Training Fund 3061 3667

5963 6726

Movement in General Fund -155 -253

Movement in designated Fund -606 3667

Total movement in funds -761 -1527

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All items have been donated or purchased from Current Assets and are valued and depreciated to show notional current value Non –monetary Assets

Items donated by National Society for Epilepsy in 1999 Display Boards , Combined TV Audio, Leaflet dispenser & Collection Boxes have been fully depreciated and have no commercial or resale value Acquired During 2001 Deskjet Printer £ 329.99 Disposed during 2004/5* Sony Notebook Computer £ 999.00 No commercial value Sony SGVA Projector £1,730.00 No commercial value Acquired During 2002 e-machines 740 PC £ 799.00 No commercial value Service Agreement £ 189.00 Expired £4,013.99 Accumulated epreciation@25% .£ 764.99 Balance at 1st April 2003 £3,249.00 Depreciation for 2003/4 @ 25% £1,041.00 Balance at 31st March 2004 £ 2,208.00 Write off on disposal 2004/5 £ 83.24* Additions in 2004/5 Epson Laser Printer £ 222.00 Depreciation @ 25% for 2004/5 £ 586.76 Value at 31st March 2005 £1,760.00 Depreciation for 2005/6 @25% £ 440.00 Value at 31st March 2006 £ 1,320.00 Depreciation for 2006/7 @25% £ 340.00 Total £ 980.00 Additions in 2006/7 Laptop Computer £ 399.00 Total £ 1,379.00 Additions in 2007/8 Canon Laser Printer £173.12 Epson Scanner £69.99 Dyson Cleaner £99.00 Many lives DVD set £120 .00 Total £1,841.11 Depreciation for 2007/8 £ 460.28 Total at 31st March 2008 £1,380.83 Additions in 2008/ HP Compaq computer £460 Word/Acrobat/Omni Page Software

£462

External Maxtor Hard Drive £50 Total £2352.83 Depreciation @25% £588.21 Value at 31st March 2009 £1764.62 Depreciation @25% £440.13 Value at 31 March 2010 £1324.49

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Notes to Receipts and Payments Account 1) Current funds are paid into a Community Direct Account at Co-operative Bank PLC, Skelmersdale and

payments are made by cheques drawn on the bank requiring the signature of two officers either to the creditor or to the Treasurer for payments made by him as agent of the Charity.

2) The funding has been obtained by direct appeal to other charities, organizations or charitable trusts.

The grant of £515 from Canterbury City Council of £400 from Whittsable and Herne Bay Lions and of £1000 from Ronald Cruickshanks Foundation have enabled us to meet the majority of our core expenses.

3) Eastern & Coastal Kent Primary Care Trust donated £250 as a prize in a competition organized by Kent

LINk this is shown as a donation in the accounts.

4) The membership fees paid relate to IAPO and to the Joint Epilepsy Council 5) Public Liability Insurance is provided as part of the membership benefits of Attend the umbrella charity

for Hospital and Community Friends organisations. 6) Notional Depreciation is calculated on a straight-line basis calculated to extinguish the value of the

asset over 5 years at a rate of 25% in the calendar year following acquisition. 7) These statements have been prepared with care by the Treasurer and agree with the books and

records of the charity. There is no requirement for audit in the constitution and the amounts are below the threshold for independent examination set by the Charity Commission. Nevertheless they have been subjected to examination and a certificate is attached.

8) A reserve policy is in place to enable the charity to meet its commitments during any period of financial

stringency including payment of the occupancy charges during the required notice period of six months.

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