Progress Report; Contacts; Ideas; Events; People; Conclusion;

Progress Report;

The West Midlands group has been in existence for just about 8 months now and we have been busy trying to do our best. Thankfully, we have been helped by the kindness of Kings Norton Golf Club which has allowed us to meet in their beautiful building without cost.

In these first two quarters we have met two main problems. Firstly, we have found it difficult to get new members. This is not hard to understand given that we are unable to have direct access to the names of people in the area who suffer with GH due to data protection laws.

Secondly, we have not had any funding with which to back up our efforts. Over the first 8 months our experience has taught us just how expensive running a support group is and how vital funding is if we are going to be able to do a good job.
Of course these 2 problems are in some senses part of the same thing, in that without more funds we cannot get the message of our existence out to people and without people we cannot do the work we need to do or attract funding, etc…..

Thankfully, the funding problem has recently been alleviated a little by the granting of an allowance of £2500.00 from the UK Society to each of the regional groups.
We have taken part in the push for this funding and obtaining it can mean that we will be able to push the support group onto a new level, but we must not rest on this and will always need to go out and raise our own sources of funding if we are going to be a real success.

 So now the work begins……….

Contacts;

The West Midlands group has received offers of help or support from Pat Waddington of the Liverpool and North West support group, and George Scott of the Scottish group. Pat has given us some very useful advice about how to organize and get things going. The North West group has been running for 3 years now and holds meetings with more than a 100 attendees. This proves the need for support groups and we have received feedback from our own efforts that proves there are people out there desperate for someone to talk to. Unfortunately, many of these calls came from areas beyond our remit following the piece on us in the Irish Post newspaper last year. This teaches us that we must try to keep going and target our efforts.

We have also maintained contacts with those hospitals and Irish community associations that have registered an interest with us, and we have received direct verbal support for our activities from Dr Tripathi at the Queen Elizabeth Liver Clinic and an invite from Dr Das in Stockport to see what he is doing on GH

Ideas;

Although we are a very new group it is surely through ideas and their implementation that we will grow and develop methods to help people in need. Listed below are some of the ideas that have been put forward for both short-term and long-term ways of  expanding our activities and aims. Please read through them and give any feedback that comes into mind and of course submit your own ideas.

• Speakers at meetings

• Letter writing campaigns

• Get professional leaflets

• Approach newspapers, churches, hospitals and GPs

• Ask Birmingham Irish Cycle Appeal for funding

• Set up a 1^st West Midlands Conference / AGM on GH

• Pass on our ideas to the UK Society

• Adds in free circulars

• Compile useful databases

• Leaflet-poster campaigns

• Mount a West Midlands raffle

• Ask local celebrities /MPs to sponsor the group

• Approach Birmingham Foundation for funding

• Set up a unified national protocol on how to advise people just diagnosed

Events;

Group visit to Stockport Stepping Hill Hospital

Dr. Debasis Das   Gastroenterologist Consultant Physician, Stepping Hill Hospital, Poplar Grove Stockport, SK2 7JE

This visit to Dr. Das´ department of gastroenterology trip will take place on Thursday the 6^th May and the arrival time will be sometime around 2pm. Exact details will be available closer to the date. For those who are not aware Dr Das is one of the most forward looking doctor in respect to Haemochromatosis. He wants to see the illness treated at centres of excellence across the country and after hearing his views I know that he understands the complexity and comprehensive impact of GH. It will, therefore, be very interesting to see what has been achieved in Stockport and this trip may help us see where we could aim in terms of our treatment in the future. As mentioned earlier the staff nurse from the Queen Elizabeth Liver Unit will be accompanying us on this trip and that should be good for the improvement of connections between hospitals and, hopefully, interesting for her. Anyone who is interested in going along on this trip should register their interest to the group as soon as possible.
Telephone 0121 457 8986 or 01564 823849

Liverpool & North West AGM
Invite to all West Midlands Group members and associates to the Liverpool & North West Support Group AGM

The Thistle Hotel Haydock Park Penny Lane Haydock, St Helens, Merseyside WA11

This event will take place at the Thistle Hotel Haydock Park on Saturday 15^th May. Proceedings start at 10am for 10.30am and will run on till about 12pm. The Liverpool & North West group has been running for 3 years now and they often have meetings with a 100 attendees. Pat Waddington of the group has been extremely helpful over the phone and has extended a general invite to people involved in the West Midlands support group. My feeling is that we can learn a lot from attending this meeting and it will be interesting to see how things are done on this scale as well as informative to hear the speakers at the meetings.
 

The UK Haemochromatosis Society AGM at the Royal Free Hospital Hampstead, London.

Royal Free Hospital Pond Street London NW3 2Q G

The UK Society AGM is held at the Royal Free Hospital, Hampstead, London 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 of the best quality as well. At the time of writing I do not have details of the speaker that will be at the meeting but you can bet it will be worth your time going along. If you want to know more the best thing to do is to contact Janet Fernau at the Society on 0208 449 1363 or by email at info@haemochromatosis.org.uk

People;

Recently Alan Mannering, who has worked for many years to improve circumstances for those with Haemochromatosis, expanded the scope of his web site which now covers several other health conditions. He has also finished compiling his story of his life interwoven with the impact of Haemochromatosis. Alan explains more………….

Conclusion;

I hope the information you have read in this newsletter has helped to bring you up to speed with what we are trying to do and that you will join in with us as time goes on. If you would like to discus anything you have read or any other issue please use any of the following contact details and don´t forget to visit the group web site at www.HaemochromatosisWM.org.uk

 Telephone 0121 457 8986 or 01564 823849