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Annual General Meeting 2005 Held at St Bartholomew’s Hospital Presentation of £10,000 cheque to the Trust by Vision Charity. Prior to the meeting being opened, Mr Peter Thompson, Director of Vision Charity, who has supported The Eyeless Trust since it was formed, addressed the meeting and explained that Vision Charity has helped to fund the Social Work, grants, holidays etc. (together with other charities) and in order to further the invaluable work carried out, Mr Thompson presented The Eyeless Trust with a cheque for £10,000. CHAIRMAN’S OPENING REMARKS: The Right Reverend David Conner opened the meeting by talking about the time he was invited by Mrs Lillian Ramsay to become President of The Eyeless Trust. During the telephone discussion he declined, but upon meeting Lillian and hearing about the work of The Trust, he changed his mind and decided to accept the role. He looked forward to attending meetings and being updated on the marvellous work that has taken place. DIRECTOR’S REPORT: Mrs Ramsay addressed the meeting as follows :
2005 has been a year during which there has been unprecedented progress with the development of several innovative ideas, the attainment of which has only been possible because of financial support provided by many of our benefactors, and here special thanks and recognition must be given to The Royal Blind Society, VICTA, and Vision Charity. Without their support it would not have been possible to develop our link with Dr Nicky Ragge’s Genetic Research Project at Moorfields Eye Hospital where one of our Social Workers, Celestria Bell, has been seconded to a weekly clinic. She is able to see families that attend, after which contact is maintained through the local Eyeless Trust Social Worker and this service has been made possible by a very generous grant from Vision Charity, a charity which indeed has the vision to appreciate the immense importance of this exciting and rewarding work. Since January over 50 new families have been referred to The Trust, which inevitably has increased the work of the Social Workers. Some families have to journey a long way to London and an overnight stay at a nearby hotel is essential. Thanks to the generosity of VICTA it has been possible to meet this need, and in addition their delightful contribution of making a “fun-day” outing for the children, such as a visit to one of the London tourist attractions, which has helped to off-set their worries or concern about the need to visit hospital. Here I should also mention the generosity of our new patron, Sir Tim Rice, who has generously given tickets for “The Lion King” to several children. A very exciting offer was made last week by Mr Dominic Grieve, MP for Beaconsfield; namely, that he has suggested that our Trustees and team of Social Workers should be given a room at the House of Commons to attend for a Day Meeting some time during 2006. He will try and invite MPs to the meeting, closely associated with the various points that I raised with him, concerning the extra cover our Social Workers have to give because there are gaps in the existing NHS and Social Services Department areas. We also discussed education for children with Special Needs, and future long-term care for those young people for whom it would not be possible to live alone. Over the past year, a very close link has developed with the Royal Blind Society which has been quick to recognise the importance of holidays. Their support and generosity by giving us the use of their delightful holiday home in Sussex has been reflected through comments made by the families who have visited there, and one aspect of the success of these holidays is due to the dedicated care and input given by Tracey, the Manageress. In addition, next year the Royal Blind Society is kindly offering holidays at the Belmont Hotel at Llandudno in North Wales, and also at various hotels in the Channel Islands. Andrew de Mille, our Consultant Fund Raiser for over 10 years, is with us to-day and his efforts on our behalf provide the backbone of our funding – Thank you Andrew. Respite Care for those very severely disabled children has proved to be more than worthwhile because it helps to alleviate stress and strain imposed upon parents. Conversely, grants to enable a child’s potential to be developed have increased enormously over the past year. I wonder if any of you happen to have next year’s diary with you? Why? Because due to the kindness of our President, The Dean of Windsor, and the Canons of St. George’s Chapel, Windsor Castle, there is to be a Gift Day when guests will bring purses containing a donation to The Eyeless Trust to an Evensong Service at St. George’s Chapel. I know, Mr President, that everyone here would like to join with me in thanking you personally. It will take place at 5.15 p.m. on Thursday, 18th May 2006. Before this Service, one of our Trustees, Mr Hertford King of Stoke Park Golf Club, has extended an invitation to families and children to a tea at Stoke Park, and then, following Evensong, he has extended another invitation to Dinner at Stoke Park for 125 guests (first come, first serve!) More details will be announced after Christmas and we are delighted that the Royal Blind Society has offered to join with us in planning this very exciting venture. As Founder, I believe this occasion will be furthering the work of The Eyeless Trust for the benefit of children and families and my earnest desire is that the service it provides will (with the support of countless supporters and benefactors) continue to expand and develop over the years to come, remembering that as the needs of the children change, the Trust’s flexibility changes to meet those needs.
I would like to say thank you to all our Social Workers, and especially to Wendy Huson who has travelled from Devon to see us today, and hopefully will be joining our team. Finally, I have a special task to perform – the introduction of the new Ramsay Award to a brother or sister who has shown an unusual degree of commitment to The Eyeless Trust for the sake of their disabled brother or sister. This year Yesenia Tanner has been a tremendous support to her sister Alanya and all her family, and she has also raised funds at her school for The Eyeless Trust, and I am pleased to invite Yesenia to come and collect the Ramsay Award. In conclusion, thank you once again to the President, Rev’d Michael Boag, and the choir of St. George’s Prep School, Windsor Castle, for supporting us at the Carol Service later on, which is always the centre piece of our AGM; a Very Happy Christmas to you all and thank you for coming. Nicky Ragge has kindly offered to bring us up to date with her latest research. Report by Dr Nicky Ragge MD MA FRCOphth FRCPCH I wish to thank the President, Lillian of course, Trustees, Directors, honoured guests and families for inviting me here. I am delighted to update you on progress over the past year, on behalf of myself and Richard Collin, who is also in the audience, as we very much run a joint enterprise. It has been a tremendous year and I have much to be grateful for, especially to The Eyeless Trust, and the other charities, Vision Charity, LOOK and VICTA in particular. First of all I think one of the major advances is the development of the Multi Disciplinary Clinic at Moorfields, where we see one to two new families each week, and where we also have Celestria Bell (as Lillian has already mentioned). This means that we have somebody with enormous skill with the families on every aspect of their care, at home, and she is the lynchpin to link with all the different social workers around the country. I have also started seeing some patients in Birmingham Children’s Hospital which has meant that for those living on the west side of the country, it is much easier than having to travel to London. I wish to give a special mention to VICTA, who have provided tremendously generous support – they have funded a dedicated laboratory worker, a part-time research co-ordinator and start-up funds for equipping the new laboratory. All this has enabled the whole project to be kick-started and enabled us to go for larger grants which will mean that the work can go ahead at a great pace. To update you on the progress that has been made to understanding why Anophthalmia or Microphthalmia occurs. So far we understand that the development of the eye is a complex interaction between your genes (like those that determine the colour of our eyes) and the environment. The development of the eye in the embryo is hugely complex but we are just beginning to identify some of the key genes that are important. We have contributed to the discovery of two major genes, SOX2 and OTX2, that appear to be very important in eye development. Some of our families have changes in these genes which probably go some way to explaining why the eyes failed to develop normally. Every family is likely to be different and our challenge is to understand what has been the cause in each and every family. This is important for families’ understanding and also for genetic counselling for future siblings, or indeed the children of those children who are affected. In the lab we now have tests for these established genes and also new genes that look as if they might be important. We have set up a diagnostic test for the SOX2 gene, in collaboration with a lab in Salisbury. This is important because results can be given in a clinical context because they have been validated in a clinical diagnostic laboratory rather than just in a research laboratory. Tremendous advances have also been made to develop the socket. If the eye has not formed properly the socket will not grow properly and so the socket has to be “fooled” into thinking that there is an eye there for the bones to develop. One of the major advances which my colleague, Mr Richard Collin, and I have been involved in using is a hydrophilic expander. This is put in as a very small device (about the size of a small pea) and then it just gently absorbs water and expands the socket, and can be left in for several weeks. It is non-invasive and is producing dramatic results. The device can be introduced without the need for general anaesthetic. Obviously if we can see the children as early as possible, then the results are even better. I have some photos here to show you some of the results we have been achieving. Finally, we have a very exciting new development in terms of vision rehabilitation for children who are born with almost no vision at all. This comes in the form of a camera that is able to interpret what it’s looking at; so this means that a child could have the camera there, focused on its hand, and also on the objects around it and then there will be a feed-back mechanism to enable the child to know where its hand is in relation to the object on the table. The importance of this is that we hope that this will encourage spatial awareness so that a blind child will be able to be told where to reach for a particular object in front of it and may be able to independently feed itself, which would be absolutely marvellous because I think that mealtimes are quite difficult. We have convened a large team of clinicians, engineers and scientists to work on this and through the generosity of VICTA and other charities, we have employed a postdoctoral computer engineer to develop the software that could be transferable to a home computer. This is early days, but nonetheless very exciting. Thank you very much. I feel very privileged to be here today to thank everybody and to continue what has been a very exciting time. Report by Mrs Celestria Bell AIMSW I had my instructions – “two minutes, Celestria, not more than three.” I often feel I wear two different hats for the Trust, or even three.
A major difference between the South East and much of the rest of England is the relative ease of access for families to two of the best hospitals in the world; Great Ormond Street and Moorfields. As you know, one of the current aims of the Eyeless Trust is to enable more families to come to these centres of excellence. My second main role is on secondment to Moorfields Eye Hospital where (as Lillian said) I am the Family Liaison Adviser for Dr Nicky Ragge’s clinics and her Genetic Research Project. I started just about this time last year – with some trepidation that I might be a bit out of touch – but, in fact, they seem to quite like a “granny person” and my previous experience as a Paediatric Medical Social Worker continues to be relevant (Dr. Ragge was very kind in her remarks). It seems to be a win-win situation: useful in the clinic, useful for the Eyeless Trust (for which I have so far forwarded 35 new referrals including 7 babies born this year) and most of all, useful for the families, to be put in touch with our network of Social Workers throughout the UK, and not be left to cope on their own. In addition, Lillian sometimes asks me to represent the Eyeless Trust at high profile meetings in London. The most recent of these was the AGM last week of the NCVO, the National Council for Voluntary Organisations. There was an added “frisson” as the celebrity address was given by David Cameron, MP. It was most encouraging to hear his emphasis on the importance of our national life of Voluntary Organisations, and his vision of less government intervention and regulation and more responsibility for citizens. However, even more pertinent was the Chief Executive’s (Stuart Etherington), address in which he described fundamental characteristics of the Voluntary Sector as being independent, inclusive, collaborative, innovative and passionate. Mr Chairman, I see all of these as being characteristic of the Eyeless Trust and of the leadership of our Director/Founder, Mrs Lillian Ramsay. Report by Mr Colin Towler I work for the equivalent of one day a week for the Trust, covering the southern half of Wales. I visit 10 families who, for the most part, live in the south east of Wales, though I have one family in Newtown (Powys, mid Wales), and one family in Swansea. The extent of vision impairment amongst the children varies from one young man who has no vision at all, to several of the children who only have one eye where vision is impaired, and have good vision from their other eye. The ages of the children are as young as 18 months in one case, and my oldest “child” is a young man of 19. Most of my families are White Welsh or English and I do have one family from a Black Caribbean background. I visit these 10 families regularly and they are very grateful for the help that The Eyeless Trust has provided:- help with hospital visiting expenses; grants towards the provision of computers and specialist computer equipment; a holiday at the Daisy Chain project in Blackpool for one family, which they thoroughly enjoyed; a garden resurfacing project for two of my families, to make the gardens level and safer for the children with limited vision; an ongoing respite care arrangement for another family where a sitter from the British Nursing Association is funded partly by the Local Authority SSD, and partly by The Eyeless Trust, to sit with a severely multiply handicapped child who has Microphthalmia and Coloboma, as well as epilepsy – while her parents (who themselves are both disabled) have an evening out each week. These are a few examples of the invaluable assistance given to my families by The Eyeless Trust, and very much appreciated. Thank you very much. Report by Mrs Ruth Boyd When I began work with the Eyeless Trust in January 2002 I inherited six families, mainly through the Micro and Anophthalmic Children’s Society. As of yesterday I have now increased this to 13 families, 4 with Anophthalmia, 3 with Microphthalmia, 4 with Coloboma and 1 each Goldenhar Syndrome and 1 as yet undiagnosed. The new referrals have come from RNIB and Family Fund. Two of these were detected by me whilst doing a visit on behalf of the Family Fund. Despite writing to all 26 health and Social Services Trusts no response came from any of the Trusts. Ages range from a baby of six months old to a young person of 23 who works for the RNIB. Families are located throughout Northern Ireland, several in the greater Belfast area, the others spread far and wide, requiring some considerable travel. I have also visited the Low Vision Clinic at Royal Victoria Hospital and plan to repeat that very soon. Two of the babies have underlying serious conditions, requiring a lot of special care. I was very busy for the first two years buying computers for 4 young people, with a grant from Lloyds TSB foundation. For this I was very glad to have help from an RNIB colleague in Belfast. Other projects have, more recently, involved two families travelling to Dr Ragge’s clinic in London (one of these is ongoing), and also arranging a holiday for two families at Honeywood House. The two families who went on holiday were very impressed with the care shown by staff there and were very vocal in praise of our organisation for making this possible. They had a great holiday. I have also arranged respite care (domiciliary) for one family and arranged for travel expenses to be paid for a baby to attend a specialist nursery. Another project which may be in the pipeline is an offer I made to a mum to teach her Braille. Her 8 year old daughter has just begun to learn Braille and mum is keen to be able to use the system also. Details have yet to be finalised, including checking to see if school or social services can offer this service. One project which was very successful was an overnight visit by 5 families to a private island in Co. Fermanagh. I had help with this from Barry Macauley, of the RNIB, who arranged football for some of the young people, as well as giving a talk to parents about the work of the RNIB. Other activities included canoeing, archery and off road jeep driving. I invited two families from the Republic of Ireland to join this week-end which was much appreciated as they very often feel isolated. Parents really enjoyed the opportunity to compare notes amidst pleasant and relaxed surroundings. I have plans to make this an annual week-end. This was partly funded by a local organisation, the Insight trust. In conclusion I continue to enjoy working with the families, and it is satisfying to have so much to offer families to make life easier. Report by Mrs Norma Fairbrother (read by Mr David Daniel) I am very sorry to have to be absent from the AGM, due to having broken an arm. The following is a brief report on recent Eyeless Trust involvement in Scotland. I visit families throughout Scotland, from Dumfries in the borders to Fochabers in Morayshire near Inverness and from Ardrossan on the West Coast to Burntisland on the East Coast, plus many places in between. To do this effectively, much to the surprise of families who have not met me before, they may see me arrive in a camper van. It has been another busy year in Scotland. Scotland as you may well know has its own legal system. Children with special needs used to have what was called a “Record of Needs” to assist them through the educational system. This has now been changed to something called a “Co-ordinated support plan.” It is designed to incorporate a wider spectrum of children's problems, including emotional ones that may be short term. If families think they are not getting the right service there is free access to legal aid and representation at the Govan Law Centre. Some families with profoundly handicapped children are trying the “Direct Payment of carers” method. This is where they are in control of who looks after their child and when. The success or failure of these new initiatives differs widely across geographical areas, depending very much on the individual skills of the personnel employed to carry them out. On the whole the objectives and projects that are being funded are appreciated as aid to improve a child's quality of life. As an Eyeless Trust Social Worker an awareness of what is available for children and families, and where to access further information and services, is an important part of my work. Through the generous funding of the Eyeless Trust, and other charities, to support the work it has been possible to help provide the children with a wide variety of items that will in some way enhance their lives. Items provided include computers, netted trampolines, trikes, aid for one little boy to compete in the “Riding for disabled Olympics”, items of clothing, music lessons, and of course the funding to help the whole family enjoy a holiday together. The most popular destination being the “Daisy Chain” holiday flats in Blackpool. A mother recently said to me that one of the things that she valued most about the service we offer is the accessibility. Having a listening ear readily available with a Home Visit and regular telephone contact when needed. This appreciation of our service was expressed in different ways by two of my families. One family held a musical evening in Inverkeithing. A local amateur big-band played an evening of Glenn Miller numbers, followed by a feast of home baking provided by Granny. Another little boy's sister attends the art and design course at Glasgow North College. Every three years the college holds a prestigious end of year Fashion Show in the banqueting hall of the beautiful marble City Chambers in Glasgow. The nominated charity that the students collected for this year, at the family’s request, was The Eyeless Trust. We are very grateful for all of the hard work that the young people put in to raise the sum of £2,750 to aid our work.I end with many thanks to :-
SOCIAL WORKERS REPORT 2005 Report by David Daniel, Social Work Administrator This year the Social Work Report will be presented somewhat differently. I shall give a general overall summary of the work done over the past 12 months, with a Social Worker representing England, Ireland, Scotland and Wales also giving a short report. The past year has been an exceptionally busy but rewarding year once again for the Social Work Team. Three Social Workers have resigned, but have now been replaced, and we have appointed a Peripatetic Nurse Adviser whose experience will be invaluable, making the total number of Field Workers 16, the highest compliment ever. At our last AGM Dr Nicola Ragge outlined her Genetic Research Programme at Moorfields Eye Hospital and the necessity to have someone in place to channel as many of our families as possible to her Clinic. Celestria Bell, one of our Social Workers was appointed as Family Liaison Officer. Through her role at Moorfields, Celestria is coming into contact with many families with older children, who previously have been unknown by the Trust, hence the record number of new referrals – a staggering 57. Of the 57 new referrals, 30 are girls, and 27 are boys. The total number of children born in 2005 is 11, which is about average. As a result of all these new cases, many of whom have additional disabilities, home visiting has increased and there is considerable extra work required. Those of you who attended last year’s A.G.M. will remember I spoke about the statutory requirement that all our Social Workers had to be registered with the Social Care Council of the country in which they worked, by April 2005. I am pleased to report that all our Social Workers have now been successfully registered and they are now able to carry out their work legally. One of the requirements of Registration is that 15 days training is undertaken within the three year registration period. Some members of the Team have been able to acquire local training programmes, free of charge, whilst others have to pay for this additional training. In-house training has included a visit to the RNIB Sunshine House School in Northwood, in London, and in September we were given a presentation by staff from the National Blind Children’s Society on the work of their organisation and ways in which we can work together with them. I, myself, attended a new course on Child Protection Awareness which has resulted in a New Guidelines Policy being produced for the Trust. Other new Policy Guidelines produced this year have been “Access to Information” under the Data Protection Act, and an Equal Opportunities Policy, which now brings us in line with other Charities. Over the past 12 months the Trust has given a total of £33,350 in grants for a variety of items, which no doubt improves the lives of our children and families. We continue to make grants for additional Respite Care Services and without this help, many of our parents would find it very difficult to cope. We have given over £15,000 this year in Respite Care alone. Our Fund Raising Consultant, Andrew de Mille, makes a fantastic effort to enable us to fund the Social Workers’ fees and to meet some of the grant requests, but as more and more families come on to our records, it is paramount that these funds continue to be available. The development of the Trust has been astonishing this year and I am sure the next 12 months will be extremely busy for all of us. The President thanked the Social Workers and Nicky Ragge for their informative reports and for the encouragement given. ACCOUNTANT / TREASURER’S REPORT By Ayo Okunuga Over the past year there has been a 48% increase in donations, this is largely due to contributions from VICTA and Vision Charity, together with the work by our Fund Raising Consultant, Andrew de Mille. Without these donations it would be very difficult to support the children in need, and it is important therefore that all these efforts are continued for the future. |
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