Newsletter June  2010

Progress Report

Well it is exactly 12 months since we set up a West Midlands support group. It seems that much more time than that has passed and it has been a busy year.

The support group has not grown in the way that most thought it could. We have not had hundreds of people contacting us to join. Data protection law has continued to plague our efforts to make people aware of the support group. Neither the UK Society, nor local hospitals are able to give us the details of people with Haemochromatosis in the West Midlands. Even getting a figure for the number of people with Haemochromatosis in the West Midlands is ´not allowed´.

This has meant that we have had to work very hard to make people aware of the support group and this will continue to be the case. Many lessons have been learnt about how to go about advertising our existence and we must continue to publicise our work if we want the support group to be a success. One lesson is that much of this effort will be wasted, for example, it is a reality that for every hundred leaflets distributed most will not ever be seen by the people for whom they are intended. However, it is my feeling that we cannot allow this sad fact to put us off doing this type of work.

One course of action that seem to work reasonable well is targeted letters but of course letter writing campaigns are extremely time consuming if good letters are to be written and good research done on who best to send such letters to. Anyone who considerers themselves to be a good letter writer could consider compiling a few letters on the group’s behalf. If you do send letters in relation to the group would you be kind enough to let Kieran know who you have written to so that I can keep a record of who we have contacted and also reimburse you for postage and other costs.

We have received ongoing  help from several sources including Chris Flood and the Sandwell Irish Community Association, Janet Fernau at the  UK Haemochromatosis Society, Pat Waddington of the North West support group and George Scot of the Scottish support group. At the same time we have been hindered by a lack of response and interest by other people and this has made the work required all the more difficult to achieve. I suppose this is to be expected but the disease of shoddy response seems to be endemic at the moment and it is a real fight to get people to do what they say they will and sometimes to get them to say anything at all.  

supportive of what the group is trying to do. He also helped us by facilitating staff nurse Carmel Maguire’s attendance on the trip to visit Dr Das and his unit in Stockport.

Also Dr Richard Murrin, a Haematologist at Sandwell General Hospital, has responded very positively to our request for help and, all being well should be talking to us at our 4^th group meeting. Dr Murrin has very kindly offered to ´provide medical input into our meetings` and I feel this is exactly what the support group needs to make it work properly and I hope we can make Dr Murrin feel very welcome when he comes.

In future it will be very difficult to secure help from professionals like Dr Murrin and we cannot depend on a single doctor as this would be most unfair for them and unconstructive to us. Hopefully, we can maintain a good relationship with Dr Murrin and Dr Tripathi while developing more contacts among the medical professionals in the West Midlands that work with Haemochromatosis. This is most important if, in the long term, the group is going to have any impact on the way care is delivered to us. I feel we all need to play our part in this and I would ask everyone to mention the group to their consultant and to their GPs and to try and secure the active participation of people like this in the activity of the group.  This responsibility lies with each one of us and I hope people will work on this in future and keep the group informed about any medical professional who wants to help us.

At the last meeting we discussed getting leaflets printed with some of the funding that has been supplied by the UK Society. Unfortunately, due to delays way beyond my control it has not been possible to get everything in place to be able to go ahead with getting leaflets printed professionally until just a couple of weeks before the June meeting date. Due to these delays I have been forced to print somewhere in the region of 1300 leaflets and posters myself and these have been distributed in small quantities to a range of locations and establishments, (Please see below).  My printer is creaking at the effort and the electric meter has threatened to go on strike if I push it anymore. Seriously though, producing leaflets and posters in this way has been expensive in paper, ink and effort but it had to be done if I was going to meet the commitments I had made to several hospitals etc and also to promote the group in new places as promised by me to the group at the last meeting in March.

some to you or, if they are ready by then, take some with you from the meeting in June. 

One other point before I move on to other matters, Pat Waddington from the North West support group has been very helpful on many occasions and one point that she has made is about the regularity of meetings. The North West group started as we have, trying to stage four meetings per year but have now moved to a situation where they only stage three meetings a year. Pat advised me that we might consider doing the same as it is difficult to find support in many ways to do any more than three meetings a year. Having worked for twelve months now with the development of the West Midlands group I think I agree with her. This issue is listed for discussion on the agenda for the 4^th group meeting and from my point of view it is important that we go over this issue then.

My own feeling is that it is much better to have three meetings well attended and maybe with speakers in attendance than four meeting less well attended, possibly without speakers and therefore less interesting for most involved, having said that I doubt, very much, that we will be able to secure speakers at every meeting even if we move to three a year rather than four meetings per year.  Also it is a lot of work to do all the back room stuff required to bring about meetings and promote the group at the same time and on that basis I think we should set our expectations in a realistic way from here on and go for three good meetings a year. We can still keep in touch by phone and email in between meetings and in this way keep the group toward the front of people’s minds. Please give me feedback on this issue if you have an opinion.

Funding & Expenditure

As everyone who attended the last meeting might remember the West Midlands support group was given an annual allowance of £2500.00 by the UK Society for expenses etc. Four hundred pounds of this allowance has been paid up front to cover day-to-day running expenses and you can see below how that fund has been managed over the last few months.  The group has also ordered 5000 leaflets to be professionally printed and these will cost £379.00

section of this newsletter and see if any of the ideas currently suggested would be ones you might wish to help develop.

Also on a funding issue I know that Bernard Kelly has been in touch with Birmingham Foundation, an organisation that sometimes helps groups like ours with funding. I have not yet heard how this has gone but believe he will report on this has when we gather at the 4^th meeting on the 16^th June. My own view is that we should have delayed any approach to Birmingham Foundation until we had in place the necessary criteria that we knew they would require, e.g. a group bank account, a governing document and most importantly of all a plan for how we would put the money to good use. When I first suggested approaching the Foundation for help, about this time last year, I had hoped it would be possible to bring about a situation where all these things happened quickly. However, this has not been the case to date and I am aware that to successfully put in place the full criteria that will make requests for financial help to Birmingham Foundation successful an awful lot of work needs to be done. We need to consider carefully who will be able to do this work before we progress any further with these plans. My feeling is that if, in future, we are going to approach funders we need to have in place a very considered plan as to why we are asking them for money.

Having said that I still think it is a good idea to try and obtain other sources of funding besides the money set aside by the UK Society. I think it would be very useful if the support group had its own bank account and assets and I have been pushing for this from the first meeting we had last August. As I say all of this takes work and people to do it. If anyone is interested in helping with the work to properly construct the group and to play a part in the management of the group or has any other funding ideas please let either myself or Bernard know and we will try to work them into the development of the group as time goes on.

Group day-to-day expenditure March – June 2010

Over the preceding months, between March and June 2010 the following work has been done to try and raise awareness of the group, its work and Haemochromatosis in the West Midlands:

• Minutes for March 2010 meeting were written, prepared and circulated to all support group members, sponsors and interested parties;
   

• Compiled agenda for June 2010 gathering questions and other relevant details;
   

• Second group newsletter written, compiled and printed in advance of 4^th group meeting in June 2010 including list of books of interest;
   

• Article written for UK Society newsletter about the West Midlands group visit to Dr Das and his team at Stepping Hill hospital in Stockport.
   

• Over 1300 leaflets and posters have been produce and sent in varying quantities to the following locations;
   

• All the members of the West Midlands support group;

• 9 local Irish Associations, Clubs and Societies;

• 54 local hospital units that have the potential to see Haemochromatosis patients;

• 47 local churches, with congregations likely to have a proportionally high number of people suffering with Haemochromatosis and people in positions of authority sympathetic to us.

• Over 150 letters, meeting minutes, locations maps etc, have been written and sent to a mixture of recipients.
   

• Numerous telephone and email contacts have been completed to stay in touch with and keep up to date members of the West Midlands group. Also many local, national and potential contacts have been corresponded with on a continual basis as and when they have shown interest in the development of the West Midlands support group and our work.

Leaflet & poster design:

Over the last few months, two different leaflets – posters have been designed and I might say re-designed and re-designed and re-designed and…. that’s enough of that. They have both been developed to be used to help promote the group. Most of you will have seen these by now but for those of you who have not they appear below. They are not perfect article and no doubt we can develop designs for publicity materials as we learn more about doing the work we are trying to do but for now they will do the job.

 The six page tri-fold leaflet, on the left, will be professionally printed as a leaflet for the group and we will initially have 5000 of these and then see how they go. The other leaflet, in the middle, has been designed so that it can be used as a leaflet or as a small (A5) poster and we will produce these ourselves as and when we need them.

There are also some stamp style adhesive stickers, on the right, for use on envelopes and packages to act as adverts for the group and reminders about Haemochromatosis.

Database Development

So that we can spread word about the support group and raise awareness generally several databases of contact names and details are being developed and these are all at different stages of development. Databases started to date are:

• West Midlands GPs (under construction)
• West Midlands Hospital Departments (54 departments have been entered and of these 7 are on our books with personal contact names to receive regular deliveries of leaflets and updates. The other 47 departments have all been contacted but we need to find the personal contact names for them in future. A nice job for someone?
• Irish Community Associations, Societies and Clubs (9 listed to date and all of these have been contacted)
• Hospital Radio Stations (6 listed to date and all of these have been contacted)
• West Midlands MPs (Bernard Kelly is doing this one)
• West Midlands Newspapers (39 identified and this is a work in progress, non yet contacted)
• West Midlands Churches (263 catalogued currently and of these 47 have been contacted to date)

Contacts

• Dr Jatesh Patel (Sandwell General Hospital)
• Dr Richard Murrin (Sandwell General Hospital)
• Dr Debasis Das (Stepping Hill Hospital, Stockport)
• The North West Support Group (Pat Waddington)
• The Scottish Support Group (George Scott)
• Carolyn Pascall secretary of the UK Society
• Father Jim Flemming (St Catherine’s Church Birmingham)
• Janet Fernau (The UK Society)
• Siobhan Gorman (The Sandwell Irish Society)
• Chris Flood (The Sandwell Irish Community Association)

Dr Jatesh Patel (Sandwell General Hospital)

Chris Flood of The Sandwell Irish Community Association took Kieran Lynch to meet Dr Jatesh Patel on behalf of the support group on Friday 9^th April. The main aim of our visit was to see if he would be able to help the group in any way. He is a doctor that does research into various blood born genetic conditions.

We had a good long meeting and many issues were discussed including the trip to Dr Das and his ideas of centres of excellence for Haemochromatosis sufferers. Although Dr Patel was interested in the concept he did not come forward with any direct offer of help for us at the moment.

He did give us one or two useful pointers and said that we should direct our efforts where they would be successful e.g. contacting local GPs. He also said the he would be interested if we could put on a regional seminar on GH and he gave us the details for Dr Murrin a Haematologist at Sandwell General Hospital. Dr Patel said that he might be able to help us further in the future.

Dr Patel also said that in his research into many blood born genetic illnesses he was finding that the current genetic testing methods were inadequate in the sense that many people who were currently being told they did not have genetic illness despite their symptoms were in fact probably suffering from those illnesses and that this might be identifiable with better testing methods in future. It was all very technical stuff but I think that is the gist of what Dr Patel said.

The outcome of the trip was a little disappointing in the sense that we did not get immediate support but it did provide some interesting little bits and pieces and it also highlighted how big a job it will be to get any change.

Dr Patel also suggested that we ask Dr Das if he could access NIHR funding and if we could pitch things in a way that the idea of a centre of excellence would save the NHS money because things would getting done quicker and cheaper that way. A good idea! He also, of course gave us the name and contact details for Dr Murrin.

Dr Richard Murrin (Sandwell General Hospital)

Following the contact with Dr Jatesh Patel at Sandwell General Hospital a letter was sent to Dr Murrin to ask if he was able to offer the group any support or would be at least willing to distribute leaflets and tell people we are in existence to help. Very graciously Dr Murrin replied that he was willing to help spread the word about the group and is also happy to give medical input for the West Midlands support group. This is great news and just what the group needs at the moment.

Dr Murrin should be speaking at the meeting on 16^th June and it will be great to meeting him and extend our gratitude for his time. Hopefully, we can build a mutually beneficial relationship with Dr Murrin over time. My personal view is that Haemochromatosis in the West Midlands is in desperate need of people like Dr Murrin who are interested in the illness and prepared to actually get involved in helping to improve understanding. I think the support group should focus on how we can play our part and respond to Dr Murrin’s help.

Dr Debasis Das (Stepping Hill Hospital, Stockport)

For those of us who went on this trip I am sure we have all drawn our own conclusions about the trip and everyone, will no doubt, have gained differently from learning about how things are done differently by Dr Das and his team at Stepping Hill Hospital in Stockport. For those who did not make the trip maybe they would like to read the following piece which tries to explain how things went:

The West Midlands heads north

On 6th May a quest for knowledge and support led 10 members of the recently formed Haemochromatosis West Midlands support group to head north. In the first few months since we formed the group we have been trying hard to get backing, direction and support for the work we are trying to do.

Most of the routes we have followed have led nowhere.  However, following a letter to Dr. Debasis Das, a Consultant Gastroenterologist Physician at Stepping Hill Hospital, Stockport, we received an invite from him to go to see what he and his team have been doing to develop a centre of excellence for the treatment of those with Haemochromatosis in their area. In attendance on the day was Dr Das, his secretary Jackie, senior venesection nurse, Sue McCormick, four other members of Dr Das´ team along with the ten West Midlands group members and staff nurse Carmel Maguire from the Queen Elizabeth hospital in Birmingham, at which many of us receive treatment. 

To be honest I not think any of us, including Dr Das, quite knew what to expect of the day. I think it is fair to say that from our group perspective we were refreshed by the way things went. In a very busy and sometime selfish world Dr Das and his team put us first and made us feel most welcome. The presentations given and the resulting discussion made for a lively and informative day with many details about the illness and its treatment coming to the surface. I know for sure that one or two people discovered details that were of direct personal use. The discussion around how iron is absorbed in the gut was most interesting. Understanding differences between how this process works in Haemochromatosis sufferers, as opposed to non-sufferers helped me see how simple and yet how complex the overload of iron in the body really is. While such understanding cannot provide any radical answer by itself, knowing this helps to explain some of the pathology involved with each of us who suffer from so many diverse symptoms.

The diversity of symptoms in fact formed a good amount of the discussion and in the short time we were there we discussed implications of Haemochromatosis from the potential for cancer through to heart conditions and diabetes.

One of the most helpful issues we discussed, particularly from the perspective of a support group with aims to augment treatment / care delivery in its locality, were the forthcoming realities with regard to cuts in health service budgets and the possible implications for those with Haemochromatosis resulting from the current financial crisis. While the West Midlands group had originally been drawn toward Dr Das, in part by his ideas for centres of excellence for Haemochromatosis treatment, our discussions with him highlighted that, in the future, care and treatment may well become dispersed rather than concentrated in centres of excellence, with, for example, venesections taking place at GP surgeries or the new Poly Clinics. While, for many, this prospect may seem a little alarming I think, in fairness, the general feeling on the day was that such dispersal of treatment need not be a problem, in itself, if the management of overall treatment and care for those with Haemochromatosis is done by people who specialise and really understand the illness as the diverse and complex condition it is.

In a way, well managed treatment of this kind may well prove to be a better experience for many, with less trips to the hospital, more localised venesections and yet even better oversight of how they are really coping with the condition. The role of technology was discussed in relation to this kind of treatment delivery and maybe that is something we in the Society could think about in the future and feedback our ideas and desires to the medical profession. How do we feel about our care and how do we feel it could be delivered better? Is there a place for technology to improve our connections to the medical profession, our records and ongoing treatment regimes?

Finally, I would like to pass on the thanks and gratitude from all those who went on this trip to Dr Das and all the members of his team who greeted us so warmly. It was a most impressive effort on your part.

The North West Support Group (Pat Waddington) It was interesting to see how another regional support group do things and one of the main reasons for going was exactly this. There were somewhere in the region of 50 people in attendance and the meeting was delivered in an audience – committee style Things started off with our friend Dr Das who spoke on many of the issues he had mentioned to the West Midlands group the week previously when we visited him. I managed to pass on our gratitude for his kindness to us. Following Dr Das there was some discussion about how the North West group have spent funding they received from Liverpool City Council. Among the items they have bought were a computer and projector system and a banner with their details on it (please see rather grainy picture). The North West Group have also purchased leaflets and use them to promote the group.

One other item that you might find interesting is the fact that it is believed that Haemochromatosis sufferers may have survived the bubonic plague rather well due to their high iron levels, Carolyn Pascall of the UK Society mentioned a book called Survival of Sickness by Dr Sharon Moalem in which this fact is mentioned (see more about this book later in the section on books). George Scott of the Scottish group also spoke mentioning issues such as the old fashioned attitudes of many GPs when people present with health issues that could be linked to GH but are often missed. He wants to work to improve on this situation and would also like to find a way to reach people who don’t come into the medical system early in life and only become aware of the damage of Haemochromatosis later when it is too later to put things right.

 Unexpectedly, I was also asked to speak but I’d rather say very little about that as I don’t really remember what I said and I sure it was not particularly relevant. I think I banged on a bit about how we all need to do our bit in the face of the challenges of making a difference. I also did mention the West Midlands group but, as I say, was not really prepared to give full details of all we have done.  More preparation next time I think.

The North West group hold a raffle to raise funds on the day of their meetings and one of their number exhibited beautiful items that he made mainly from turned wood which were on sale and added to the interest of the day. Tea, coffee and cakes were on offer all free of charge, very nice but very expensive I would imagine in such a nice hotel and with such numbers?

It was mentioned that the 19^th June this year is going to be the 1^st National Haemochromatosis Day. It will be interesting to see how this fact is projected to the outside world and therefore beyond the Society and its members.

Myself and Lindsay (my partner) and Bernard Kelly and Sheila (his wife) all attended the North West AGM and I believe we saw much that we can learn from as we try to develop the West Midlands group.

The Scottish Support Group (George Scott, UK Society director)

While at the North West AGM I managed to have a brief conversation with George Scott and his wife, Elizabeth. George passed on his best wishes to the West Midlands group. I also thanked George for the part he played in securing funding for the regional groups. George seems to be a dynamic fellow and I think we would do well to keep in touch with him with him over time.

Carolyn Pascall (Secretary of the UK Society)

Also at the North West AGM I met Carolyn for the first time she expressed excitement at what we are trying to do in the West Midlands and offered her support to us. Carolyn said that she had intended to attend the next West Midlands group meeting but unfortunately her diary does not allow it for our June 16^th meeting so she will try to get along to the meeting after that. I feel it would be very good to have someone from the UK Society come along to help  guide us as a group and to observe how we manage things, so I hope Carolyn will make it in the Autumn.

Father Jim Flemming (St Catherine’s Church Birmingham)

After I sent out publicity materials to local churches in May I received a call from a very nice gentleman, Father Jim Flemming of St Catherine’s Church in central Birmingham, (the one with the great big green dome). He expressed an interest in knowing more about Haemochromatosis and about the West Midlands group. Father Flemming said that he intended to put information about the illness and the West Midlands group in his church bulletin and in his sermon. He had also already circulated the information from the materials that had been sent. Father Flemming mentioned that one of his colleagues in the Philippines had been identified as having Haemochromatosis so he was aware of the illness.

This sort of result from our work is very rewarding because although we may not get new members to the group or any direct return on our efforts we are raising awareness in a good way and which, of course, is one of our aims. It would be nice to know that our publicity materials would work like this in every case but that is never likely to be so. However, there are probable more people like Father Flemming who take the time to pass on awareness about Haemochromatosis and if that saves one person suffering badly from the illness that’s good enough for me.

Janet Fernau (The UK Society)

Unfortunately for Janet I have been in constant touch with her over the last couple of months. I felt this was important as several issues, such as the West Midlands group leaflets and many others, have arisen on which I needed guidance at this time. I feel this is particularly necessary because now we are receiving funds from the UK Society and until we have been in operation for a little longer, and know the ropes, it is only fair to check on the suitability of certain actions with the UK Society. Obviously as time goes by this should be less so the case and Janet will get a well deserved rest from my calls. Thanks once again to Janet for helping me out.

Siobhan Gorman (The Sandwell Irish Society)

Siobhan has kept in touch and as many of you will be aware she invited us along to the Sandwell Irish Society Rose of Tralee Selection event in May. Siobhan has expressed a desire to make it to the meeting in June and I hope she finds the time to come along and join in our work.

Chris Flood (The Sandwell Irish Community Association) Chris Flood of the Sandwell Irish Community Association has continued to take an interest the development of the West Midlands support group and has helped me personally to come to grips with some of the realities of trying to set up and run such an organization. I am very grateful to him for that. Of course it is because of Chris’s interest that we have been put in contact with Dr Richard Murrin who should be speaking at the June meeting. Chris has done much more than that and has offered me advice on issues such as leaflet design and potential future problems we might face. I respect the fact that Chris has a lot of experience and it great to have his input at this time.  He has also continued to offer us a ´desk´ at the office of the Sandwell Irish Community Association. This offer is something we might do well to consider as it includes help with the practical work involved in running the group.

Also I was invited over to Sandwell to attend the opening of the Sandwell Irish Community Association’s new urban garden project. The invite was at short notice but luckily I was able to persuade a neighbour to take me and I spent an hour or so enjoying the event. Gentle Irish music drifted into a dark and threatening sky and I worried that the day would be a wash out but the opposite was very much the case.

The gathering was very warm and friendly and mixed in everyway and attended by local dignitaries with Professor Carl Chinn doing to honours of officially opening the garden. I was impressed by what had been achieved with the garden and all with voluntary help. The vegetables and other plants will need to grow before it is complete but you could see the potential and I am sure many people will get a great deal of pleasure from the work done. In a way the garden reminded me of the status of our support group in that many things have been planted and are in place to grow but will need constant tending if they are to grow well and feed our needs.

Chris very kindly introduced me to Carl Chinn and we spoke about the West Midlands support group and about Haemochromatosis in general. Carl Chinn said that he would be happy to support us and advised me to write to him telling him in more detail what we are doing. He also mentioned that there may be an opportunity for us to feature on a radio programme that he is going to do shortly. I will write to Mr Chinn shortly and keep in touch with Chris Flood in relation to the radio opportunity in due course. As with other people I have mentioned I would like to thank Chris for taking us seriously and more importantly for taking seriously Haemochromatosis. We could do with a few more like him.

Events

June the 19th is the date of the UK Society AGM and as I have already mentioned also the date of the 1st National Haemochromatosis Day. I am not at all sure what events have been planned to mark the 1st National Day. If I find out more before our June meeting I will let you know then. As for the National AGM full details are outlined below;

The UK Society AGM is held at the Royal Free Hospital, Hampstead, Pond StreetLondon NW3 2Q G on Saturday 19^th June. The meeting starts at 10:30 for 11am and runs for the best part of the day. Refreshments are served and are of the best quality as well I might say.

HAEMOCHROMATOSIS SOCIETY ANNUAL GENERAL MEETING AND CONFERENCE

NOTICE IS HEREBY GIVEN that the ANNUAL GENERAL MEETING of the above named Society will be held at the Sherlock Education Centre, Medical School, the Royal Free Hospital, Hampstead, on June 19^th 2010 at 10.30 am for 11.00 am for the purposes of considering the matters detailed in the Agenda as follows:

1. Apologies for absence.

2. Minutes from 2009 AGM.         

3. To consider the accounts, balance sheet and the report of the Directors and Auditor.

4. To re-appoint Geoffrey Hodge as Auditor and authorise the Directors to fix his remuneration.

5. Special Resolution to approve the addition of the following words at the end of Clause 7 of the Society's Memorandum of Association
   "Nothing in this constitution shall authorize an application of the property of the charity for purposes which are not charitable in accordance with section 7 Charities and Trustee Investment (Scotland) Act 2005."

6. Re-election of Director

7. Directors’ Reports including regional meetings and future projects

8. To transact any other business.

9. To arrange the date of the 2011 AGM

By order of the Board
Carolyn Pascall, Secretary

The conference, speakers include:                                                                                                              

• Anthony Waddington, Consultant Podiatric Surgeon at Hereford Hospital: Causes and effects of arthritis and gout

•  Dr Dooley: European Association for the Study of the Liver Clinical Practice New Guidelines

• Desley White, Dietician, Report from Bath Conference - Errant Iron in the Body
  Marion Bartlett, Genetic Counselling for families

• Reports from Regional Groups followed by a discussion session on planning for the future.

Ideas

Much of the work done to keep the support group going by its very nature needs to be done centrally in a co-ordinated fashion and often by few people. This approach often works best because it enables the application of a strategic type of thinking which avoids many too the application of a strategic type of thinking which avoids many too many heads leading us in different directions.

However, this should not let people think that they cannot contribute to make things happen. Below are some of the ideas that have developed over the first year that might help promote the group. If anyone is prepared to do anything on the list that would be great. There is no pressure for people to do this and it is true that even the smallest input can bring great results. Just turning up at meetings is contributing and the life blood of the support group.

If you do get the feeling that you would like to have a go at something please let me know what you are doing so that any results can be noted and co-ordinated within the overall effort to make the group work and good luck! Also any further ideas are always useful so if you think of something, again let Kieran or Bernard know when you get a moment and we will try to incorporate the idea into the plans in someway.

• Everyone to ask their doctors and consultants if they would be willing to be speakers at support group meetings;
• Letter writing campaigns, to include approaches by individual group members to their MPs (see Bernard Kelly who is compiling a list of contact details for local MPs). Also letters could be written to local celebrities to see if they will lend us support in any way and also for letters to be written to all local newspapers by individual members telling them what we are doing (see Kieran Lynch for details about when the database of local newspapers will be completed);
• Approaches to be made to local churches, hospitals and GPs plus organisations such as disability charities and community groups to solicit their support in extending our aims and in finding new members;
• Put together an appeal to  Birmingham Irish Cycle Appeal for funding support;
• Work toward setting up a 1^st West Midlands Conference / AGM on GH (some way off in the future maybe but still worth working for);
• Put together a list of free circulars etc that might allow us to advertise our existence;
• Distribute group leaflets far and wide to anywhere that will display them where people with a need may see them of course;
• Mount a West Midlands raffle to run from meeting date to meeting date;
• Approach Birmingham Foundation for funding support when we have set up the group in an adequate fashion that permits us to apply for help;
• Set up a unified national protocol on how to advise people just diagnosed;
• West Midlands support group to either adopt the UK Society governing document or to develop its own;
• West Midlands support group to compile a template letter which newly diagnosed people could take along to their GP so that they would both be better informed about how to approach future care and treatment;
• Place group leaflets and A5 posters in chemists and dentists waiting rooms;

Conclusion

Before I finally conclude I would like thank everyone who has taken part in developing the West Midlands support group in its first year. I would also like to pose you a question, a question that has arisen from the last twelve months working on the support group. What do you want from the support group? This question or derivatives of it have been voiced on many occasions and I have noted that its repetition indicates a certain uncertainty about what the support group is for. I can, obviously, only supply my own answer to it. I am relatively sure what we could achieve.

 I think all of us who have taken any part in the West Midlands support group should dwell a little on this question. There will no doubt be many individual answers but I feel that only if we reach some sort of consensus can we really push on and get some work done. That is not to say that the group cannot be different things to different people, it should always be that but working to promote the group is difficult if we don’t know where we are going we could be in a little trouble.

• Are we simply working to provide a place to meet up and talk about mutual problems?
• Is getting speakers to come along and increase our knowledge the most important thing?
• Do we want to work as a unit to change the current situation as regards our care and how it is delivered?
• What other purposes does the idea of a support group fulfil?

While for some these questions may seem a little unnecessary finding some answers is important in my opinion. I have worked hard to make something happen as regards a support group for the West Midlands area but I want to work toward everyone’s goals not just my own. It would be really useful to hear what everyone thinks about this to help guide future decisions about how to develop the group. All of that aside I think we have done ok in the first year and as I said at the outset of this newsletter it has felt very busy. I hope people feel they have benefited from taking part in the group and will continue to take part in the group meetings and maybe other areas of the work on the group as time goes by. As most of you already know you can always get hold of me if you have comments, ideas or requests either by phone on 0121 457 8986 or by email on info@HaemochromatosisWM.org.uk

Many thanks
Kieran (Co-ordinator / vice chair)

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