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Hypermobility East Anglia Group


									Hypermobility East Anglia Group Annual Report June 2004 – May 2005 Overview from the chair What a year this has been, especially when we look back to this time last year, because we were concerned about our financial situation however the finance soon came into the organisation, but this was about communication, namely the lack of it. This funding enabled us to become a fully registered charity. There have been a lot of events that we have dealt with, as you will see from the diary sheet section. We have dealt with a lot distressed people who were not getting the services that they are entitled to, such as referrals to the DRC and writing to statutory service providers about what they should be doing and there is a lot left to do within this organisation. Most of the work is about finding problems within the educational sector, which has not been easy as this creates loads of paperwork. As a result of this we had to take on a volunteer who would keep our website up to date, with the additional purchase of a laptop. We have been through that complex area of CLS (Community Legal Services) and after the fact the fact that they lost our paperwork and did not award us with the proper quality mark, we have just started with the implementation of PQASSO. The major work this year was about getting ourselves established and this is what has happened; also as you will see from the calendar a lot has happened this year with the bulk of the work-taking place from May through to September. Then it tends to quiet down for sometime, but a lot depends on the take up of our services. Developments In June/July 2004 to January 2005 we were involved in negotiations about the successful set up of a Pilate programme for children at a school in Dovercourt, Essex. Thankfully this is achieving quite good results to the extent that the children concerned would like to do it again. We have also found out that there a particular child has enjoyed it so much that he would do it again and also at the secondary school, however we hope that he will pass this information on. This year we hoped to set up a support network for people aged 11-25 to be known as Action plus, but this did not take off, despite having paid out £ 55.00 to the National Children’s Bureau and £ 25.00 to Atlantic Data for Police and Criminal record checks. Despite this it is still important to as we need to keep up to date with legal requirements. 1

In addition to this we have been on the hunt for an animation to produce an educational CD/DVD for us to make available and present when bring these issues to general public at large (more of this will be made available in the future development section) Thankfully with our links with SAVO (Suffolk Association of Voluntary Organisations) Newmarket and we will not have to pay volunteers expenses, as they will. Colchester branch developments The Colchester branch was formed in September 2002 and is headed up by Karen Allen our vice chair. Since that time the branch has been slowly developed and is taking shape steadily. Karen who heads up the branch has brought her skills and experience from experience from belonging to other groups in the past. Throughout this year Karen has been involved with disabilities groups such as Phoenix swimming where she has discovered a lot of parents who have children with Hypermobility and other conditions such as Brittle bone disease and Downs Syndrome combined with Hypermobility and this leads to communication problems within itself. This has led to Karen having to attend a Makaton course to help communicate with Downs syndrome, which she has told us that she is enjoying; also this is having an effect on her own household. What you also have to remember is that our vice chair has three disabled children one of which who is severely affected with this condition. What Karen finds amazing with her links within the community outreach work is that there are people with the condition who are far worse of than others, also how come some people are getting different levels of service and some are not getting a service at all! Also Karen has become so busy because of sitting on forums and networking with other groups and she has worked with special needs schools in the area and there have been some good reports even a headmaster who has been very accommodating. Karen also spends a lot of time with parents trying to help them; in addition Karen gets the back up from the HQ. This takes the form of where to refer people for example the Children’s legal centre or contacting the DRC. You see Karen states that she is finding new people all the time who are not being catered for.


Information Officer In November 2004 we recruited a part time Information Officer, who works for us on a voluntary basis. Although he is not local to East Anglia, his IT and writing skills made him an obvious choice for this post. His duties include updating the charity’s website, editorial work on our publications, and drafting applications for grants and funding. Due to our Information Officer’s circumstances, distance working is a necessity. We therefore provided him with a laptop PC to enable him to work from home. He has upgraded the hardware and software at his own cost in order to achieve increased effectiveness and efficiency, enabling him to do the same amount of work in less time. Document design and house style are two major issues on which he has made great inroads. Key concepts that he has introduced are the adoption of Frutiger Light as our standard font and navy blue as our corporate colour. For this he has drawn on his experience in two government departments.


Hypermobility East Anglia Group Aims & Objectives 2005 Principal Objective For the benefit of people suffering from Hypermobility, living in East Anglia, in an effort to advance education and promote good health by offering support and advice in such charitable ways as the trustees from time to determine. Our principal aims are these:  To raise awareness of Hypermobility amongst the caring professions, educationalists and service providers throughout East Anglia  To empower and enable people with Hypermobility to structure their own care plan based on all available and relevant information  To collaborate with local health care providers in improving service to people with Hypermobility We are particularly seeking to reach Hypermobility sufferers at the younger end of the age range, as that is where we believe we can make the most difference for people. For instance, we have recently started a Pilate’s programme in a primary school. We are also seeking to establish a support network for parents and carers of children with Hypermobility, and a facilitated peer support group for teenagers. Initially our focus was on Colchester and the Tendring peninsula (the area of land to the east of Colchester), but in response to demand we have widened our coverage to the whole of East Anglia – and changed our name accordingly. We reach people through contacts in other disability organisations and groups, through interviews on local radio, via our website and by word of mouth. We also participate in local healthcare forums and consultative groups. Unlike some other organisations, we do not charge a membership fee and we do not require a medical diagnosis in order to help or advise someone. We do not refuse help to “out of area” contacts: indeed, we have provided advice to people living in Scotland and in the USA. Under the heading of “care plan” we include lifestyle adaptations and such aids to living as may be required by people with Hypermobility. The merino wool bedding and Opurest mattresses that we seek to provide fall into this

latter category. We spend approximately a third of our lives asleep, and it is important to achieve proper support for the affected joints throughout the night. A comfortable bed contributes to a pain-free and undisturbed night. Activities of Hypermobility East Anglia Group 2004- 2005

Date 4th June 2004

Type of Event Details of the Event Volunteers Thank you As part of our affiliation with Colchester we were meeting Colchester invited to the Mayor's Thank you to the voluntary Town Hall sector and also an opportunity to network with the community

Date 8th June 2004

Type of Event Details of the Event Chairman’s The chairman of Tendring Community Voluntary services, Pat Meetings Manning, invited us to a new initative that was lauched. Initially this is meant to be a bi-monthly support service for people who find themselves with high levels of responsibilities, also an opportunity to help others.

Date 9th June 2004

Type of Event Details of the Event Colchester PPI As part of our continued work within the community we and New General had the opportunity to attend a PPI meeting concerning Medical Services the new work in the walk in centre and the GMS contracts in Colchester. This gave us our opportunity to put our points forward about health services and to point out that Colchester Primary Care Trust had got their facts wrong

Date Type of Event Details of the Event 11 th Work with sure start Benjamin Mann from Clacton Sure came to visit us to June outreach discuss our development plans for services to people 2004 opportunities affected in West Clacton, but we will wait to see what develops as of this meeting. Date 17th June 2004 Type of Event Tendring Disability Sports Forum Details of the Event Through our Partnership with Dominic Everett Disabled Sports coordinator for Essex County council suggested that we sit on the committee at Clacton Leisure centre, apparently it is to be called Tendring Whizz Kids and also it will be important to address children with Hypermobility issues, as they seem to being forgotten about.


Date 24th June 2004

Type of Details of the Event Event Essex We attended this buffet event with the added addition of Connexions several workshop topics looking at how services can be adapted for young disabled people, we also made some links with Braintree District Council. This event took place at Greenstead Community Centre Type of Event Details of the Event Colchester Community This was an opportunity to attend the usual bivoluntary service Forum, monthly CCVS forum and the incoming Disability St Johns & Highwoods Discrimination Act and what the implications would Community Centre be for service users also the voluntary sector, also how and where we stand. Type of Details of the Event Event Tendring We were absolutely delighted with the opportunity to have a stand Show in the Tendring local strategic partnership tent. This is part of our joint working partnership with the voluntary strategic sub group. On the day we had 38 visitors and some from the statutory services including the Education Action Zones. We hope to this next year and we are looking at what giveaways can look at.

Date 8th July 2004

Date 10th July 2004

Date 13th July 2004

Type of Details of the Event Event Essex This time this meeting took place at Colchester's Wilson Marriage Forum centre, and on the list of topics was the discussion about the Meeting controversial New Model Special Schools, A presentation was given by Parents Supporting Parents, about their work, especially their new shop and offices in Harwich, For which we have been office a base in the Tendring area. Also there was the discussion about a report that a representative from SAFE, a charity that looks after aspergers Children and the problems that children are facing, as there is no provision for them.

Date Type of Event Details of the Event 15th July The Sunday This was a fundraising event put on by the Clacton Carnival 2004 Show - Clacton association and a means of fundraising, also raising our profile Date 25th Type Event Harwich of Details of the Event This was an opportunity to raise our profile, also to have the 6

Date July 2005 Date 27th 2004

Type of Details of the Event Event Sea Festival opportunity to do some fundraising, but the weather was foul and so we only raised a little amount of money. Type of Event Details of the Event July Clacton Air Show Community Fair, This was another opportunity mainly Pier Avenue for fundraising.

Date 10th August 2004

Type of Event Details of the Event Education This meeting with EAZ Clacton rep came about after Action Zone consultation over our Local network fund grant. Initially this meeting was to discuss outreach into the community with the development of Bishop's College and taking our voluntary services into the school together with Teen Talk Type of Event Details of the Event Community Fair - We were invited to be part of another information Coppins Way and awareness day. This involved voluntary and Clacton statutory services; next year provided our funding comes through we are planning a multimedia presentation. Type of Event Details of the Event Colchester As part of our work with Colchester Cornerstone Cornerstone - we had the opportunity to work with other Outreach Awareness agencies in Colchester, by having a presence event ASDA at the Colchester ASDA

Date 4th September 2004

Date 6th September 2004

Date 7th September 2004

Type of Event Details of the Event Chairman’s Meeting This time this meeting was a talk about the Tendring Community Human Rights Acts and the implications for Voluntary service individuals rights and in our case disabled people.

Date 8th September 2004

Type of Details of the Event Event Tendring We were invited to the Tendring access group, which is a Access part of a group for people with disabilities and this time it Group was a meeting that we were able to attend. We were 7


Type Event


Details of the Event slightly disappointed, as it seemed to go on rather a long time that was stated. However a couple of weeks later we were given an apology as were meant to be given an introduction. This will be addressed when we find time to make the next appropriate meeting.

Date 9th September 2004

Type of Event Colchester Homestart Meeting

Details of the Event As part of our continuation of outreach work in Colchester, namely st. Anne’s Ward, we try and work with organisation that we have a joint interest in and especially when this concerns some of our clients. The meeting in this case was concerning Disabled issues around people and clients of ours, this involved a borough Council official, and in this case this was about the extension to the side of a person's house. It would seem that this council official seemed to fob our client off, however this is an ongoing battle.

Date 10th September 2004

Type of Event Details of the Event Outreach and We tried to have an outreach event, namely an information outreach event at Tendring Community Voluntary event services, Sams halls, but no-one turned up. We blame the press as they failed to print this, also BBC Essex failed to announce this. Type of Event Details of the Event Training Nurse Another successful event was the training of nurse Practioners (Walk practioners for the new out of hours walk in centre in Centre, (NHS), the basis of this was to give them some Colchester) understanding of Hypermobility and the condition itself. This happened due to a long-term booking, as we have found out that the medical community do not know very much about the condition. Type of Event Details of the Event Tendring This year we managed to get along to the Buffet Community AGM for Tendring Community Voluntary service , Voluntary service and along with that this gave us an opportunity to AGM network with other people from different backgrounds, including a few councillors Type of Event Long-term Details of the Event As part of our work with trying to get change within 8

Date 15th September 2004

Date 15th September 2004 7:30 PM

Date 21st

Date September 2004

Type of Event Details of the Event Conditions the health system, we were invited to sit on a meetings steering committee for Long-term conditions. This is Colchester Primary a joint initiative between two trusts, namely Tendring Care Trust and Colchester Primary Care Trust’s; also we were asked to sit in the Children's sub group. Type of Event Details of the Event Developmental Meeting at St. This meeting was called by us to Joseph's School Dovercourt discuss the developments over Pilate classes.

Date 21st September 2004

Date 22nd September 2004

Type of Event Details of the Event Disability Living This took place at Wembley conference centre, Foundation again we have made some good contacts, but next Exhibition year we have decided not too attend, because this is London about to be moved to Alexander Palace, but this is not very disabled accessible, because of getting to it. Type of Event Disability information meeting Details of the Event This was a meeting that took place at Buckets & Spades Nursery about therapy services and also to give advice about access to a heated swimming pool.

Date 14th October 2004 Date 20th November 2004 Date 10th January 2005

Type of Event Details of the Event Tendring Community This year was a most successful year for us Voluntary service Victorian as we raised £ 88.00 and our secret was to Christmas Market hold a raffle and a lucky dip. Details of the Event This meeting was about the services that we offer at this information centre, also to talk about our development plans, and in our case a programme called Action Plus, amongst other topics that were brought up was the room allocation. Also window displays.

Type of Event Providers MeetingColchester Cornerstone

Date Type of Event Details of the Event 17th January 2005 Essex Coalition of Disabled People- AGM Date 9th Type of Event Details of the Event Bi-monthly This bi-monthly meeting took place at PARC, Gt Notley, 9

Date February 2005

Type of Event Details of the Event Meeting of Braintree. It is the Essex Forum's plan to move around the Essex Forum county of Essex. Amongst the topics discussed was the development of PARC, basically parents to support disabled children with special needs formed this. They where talking about the costs of transporting children to the centre on Sundays. The other topic discussed was the work of the Children’s legal centre, this was very interesting, and so much so that we have taken out a subscription of the magazine called Child Right that puts the law into some common sense. Details of the Event Voluntary Attended a forum Diversity

Date 10th 2005 Date 7th March 2005

Type of Event February Colchester Community Services Forum


Type of Event Details of the Event Colchester This time there were only three of us in attendance, when Cornerstone normally we have at least 20 different organisations Providers forum present, never mind this, because this became known as meeting an informal meeting rather than people gathering round a large table. Discussion point this time was about the Primary Care Trust squeeze on resources and funding, therefore this would mean that there would be a shortage of available staff about to be able to deal with this within an effective manner. Next topic was the window displays, we would but it is a case of trying to find the right person within cornerstone about doing a display. Next was the work being talked about the Pension credits and the publications called touch base. We next had the opportunity to talk about our development plans, such as the Parents Support Network for Hypermobility and funding- who we could approach about reaching our goals for example GP care advisors, nurse practioners, but we have already done this , so this time we shall wait and see.

Date Type of Event Details of the Event 9th March 2005 Colchester Access Forum Date 15th March 2005 Type of Event Disability Access Forum for Details This was an opportunity for us disabled people to have our say on matters that affect us around the Colchester Area, in 10

Colcheste particular over a whole range of issues, r including disabled access to transport, Street furniture which is a death trap, information line and in the afternoon rights of access

18th March 2005

Working together Conferen ce (Essex Forum)

This is the annual event for the Essex Forum that is held every year at Hylands House Chelmsford and this concerns special educational needs in all setting. Among the points of conference this year was the update on ESPP, The new structure in Essex concerning children and Young People's Service. The effect of changes on voluntary groups (namely funding issues) given by the Essex Community Foundation. Working together with parent by Shelia Wolfendale Director, Doctorate in Educational Psychology School of Psychology, University of East Anglia, talking about all the changes that have happened through various government papers, some good and some not so good. There was then the opportunity to split into the groups, we were put in the group known as Parents and Partnership and this was looking at how parents want better partnerships with the statutory and professional backgrounds, which by the way covers the voluntary sector. It gave us the opportunity to inform those in our group that some of our clients can often have a blazing row with the professional just to get their point across, which can be a good thing and should not just be seen as a negative point of view as this can make the professional listen and take note. Also we talked about a honesty policy and four way communication that is to put the child in the centre of the discussion and not ignore them. There was later after lunch the opportunity to share and feedback and it would seem 11

that there is a common thread starting to come about. There was a lot more at conference this year, and very stimulating and controversial. 22nd March 2005 Long-term Conditions meeting CPCT This was the usual bi-monthly meeting that took place and this became heated to the extent that there was emergency that took precedent over the rest of the meeting.


Hypermobility East Anglia Group Profit & Loss From: Month 1 June 2004 To: Month 12 May 2004
Income Main income Sale of assets Other Sales Period £ 4,467.33 -£ 50.00 £ 53.38 £ 4,470.71 Purchases Costs Year to Date £ 4,467.33 -£ 50.00 £ 53.38 £ 4,470.71


27.00 £ 27.00


27.00 £ 27.00

Direct Expenses

£ Gross Profit/(Loss): £ 4,443.71.

£ £ 4,443.71

Overheads Rent Travelling Printing & Stationery Equipment Maintenance Bank charge & Interest General Expenses Net Profit/(Loss):

£ 15.00 -£ 36.51 £ 1.225.95 £ 512.65 £ 31.00 £ 25.00 £ 56.89 £ £ 1,829.98 2,613.73

£ 15.00 -£ 36.51 £ 1.225.95 £ 512.65 £ 31.00 £ 25.00 £ 56.89 £ 1,829.98 £ 2,613.73


Hypermobility East Anglia Group Balance Sheet From: Month 1 June 2004 To: Month 12 May 2004
Period Fixed Assets Property Office Equipment Furniture & Fixtures £ 54.76 £ 1,115.49 £ 7.40 £ 1,177.65 Current Assets Debtors Deposits & Cash Bank Account VAT Liability Current Liabilities Creditors: Short Term Current Assets less liabilities Net Assets: Capital & Reserves Share Capital Reserves P&L Account Previous Year Adj Year to Date £ 54.76 £ 1,115.49 -£ 138.60 £ 1,031.65

£ £ £ 1,064.18 £ 1,235.30

£ 39.02 -£ 1.00 £ 2,796.24 £ 3,099.17

-£ 160.78 -£ 160.78 £ 1,396.08 £ 2,573.73


3.22 -£ 3.22 £ 3,102.39 £ 4,134.04

£ £ £ 2,613.73 £ 2,613.73

£ 2.00 £ 1,677.14 £ 2,613.73 -£ 365.58 £ 3,927.29


Future Developments We are seriously taking on board the idea of a support network for parents who have children with Hypermobility and other associated needs. You see what we are coming across all the time in the areas we cover, that there are no services available for children age five onwards. Also we are finding major problems within our schools over the special needs assessments and accusing our clients of being lazy and worse, this extends from age five right through to all ages in education. What this network will enable parents to do is to find solutions, not a talking shop, because this not achieve very much. The programme, which is dependent of funding we will be well resourced, including working in partnership with Parents Supporting Parents at Harwich, who have incidentally offered us a new office, which has taken up. Also the network will include partnership with SNAP, the Essex Forum and other organisations as we grow in numbers. It will include parents working out solutions and loads of training will be offered, also with some added responsibilities, such as running the group, when one of can’t always make it, due to other commitments. The other programme that we want to expand and continue with is our Pilate “Fun & Fitness” that has been taking place since February 2005 at St. Joseph’s schools Dovercourt, Essex and this is proving successful so much so that some of the children want to do the course again. What we have discovered is that there is an unmet need within the community as we have a lot of parents who need this form of treatment/therapy as children /young people have major problems taking part in conventional sport at school, but we have discovered cycling and swimming can be adapted. For a full breakdown of costings include two budgets.


Liability Insurance

Option A Option B £ 431.00 £ 822.00 Budget 1 £ 1,280.00 £ 17.48 £ 50.00 £ 400.00 £ 1,000.00 £ 1,000.00 £ 4,178.48 Budget 2 £ £ 17.48 £ 50.00 £ 400.00 £ 1,000.00 £ 1,000.00

Instructor £ 40.00 * 32 1 Video Certificates Promotional work Volunteer costs Training Option A Total Option B Total

£ 3,720.48

We are currently in the process of trying to get a form of animation produced on CD, so that we can use this as an educational tool, for presentations and we have approached several sources, but nothing has happened as of yet, so if there is anyone who would like to become involved with this vital project contact us now. Since we have restricted fund for the project at the school, which runs until October 2005, we decided that in order to catch some of the work that goes on behind the scenes that it was vital to purchase a digital camcorder through our own personal pocket, also this will capture all of the events that go on, so that this can be shown at a few information days that are being planned from June 2005. Further Outreach Since we became a registered charity July 2004 it is becoming apparent that everything is not as good as it seems, namely that health service and the educations system is wonderful as the government (labour would like it to be). In light of this we feel that we need to form a means of support in the area of the region and nationwide. To give you idea of this we are looking at support in these places.        Suffolk as a whole, including Ipswich, Newmarket and countywide Cambridgeshire Hertfordshire Yorkshire Leicestershire Scotland Birmingham


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