Building Haemochromatosis connections in the West Midlands

On the warmest October day on record we held the autumn meeting of the Haemochromatosis West Midlands support group. I think the warm weather may have kept numbers down at this meeting, which is a shame as we had a very interesting mix of visitors with us on the day. The mixture of guests was not really intended but it did equip us for another lively meeting.

These visitors included, Laura Boyes, a registered genetic counsellor from the Genetics Unit at, Birmingham Women’s Hospital, plus Lisa Brown, the British Liver Trust’s, Regional Support Group Co-ordinator for the Midlands & Wales and Kate McHugh from the Birmingham Irish Welfare & Information Centre.

We were also lucky enough to have the company of Pat Waddington and Marguerite Smith from the Merseyside and North West Haemochromatosis support group. They had come all the way from Liverpool and Blackpool respectively to support our group and to offer us much needed advice on how to go about structuring our group in future for best success. All the above is what I call a full guest list for one meeting and it did make fitting in all the elements very difficult, given our fixed time limit of just 2 ½ hours.

Presentation on genetics:

Laura Boyes, the genetic counsellor, gave a PowerPoint presentation using moving graphic representations to help unravel the complexity of genetics in general and the specific relationships between faulty genes, normal genes and people being unaffected, carriers or sufferers of genetic illness. 

More specifically Laura also explained how all these processes worked in relation to Haemochromatosis. As expected her explanations meet varied levels of understanding from gratefulness of issues finally explained to frustration at continuing difficulty at being unable to grasp the more complex issues involved.

 This was exactly why the group had asked Laura to come along. Simple genetics is relatively straight forward to understand and I belief  Laura succeeded very easily at laying out issues such as the odds of having a 50/50 chance or a 1 in 4 chance of developing illness depending on all the possible combinations of inheritance of genes depending on  the genetic patterns carried by ones parents. At the same time the obvious frustration of some to grasp complex genetics proved the need for re-iteration of these facts, a sentiment expressed by Laura on the day. Laura was happy throughout her presentation to answer questions and try to get to the bottom of people’s concerns.

 So much so did Laura understand that the issues were difficult for people to grasp that she suggested that local people should contact their GPs to arrange for consultations at the genetics unit. Laura even went as far as to hand out direct contact details for herself and the unit if people had specific questions they would like to follow up on. A very unusual level of interaction between sufferers and medics not directly connected to them or even, in some cases, when connected to them. We must thank Laura for her contribution and openness to our problems and concerns.

Feedback on work since last meeting & other business

Following the presentation from Laura we covered some group business including;

1. the development of promotional items to raise awareness, including FE lapel badges from the North West group, FE key rings, bookmarks, pens and car stickers, all of which were available free or for a small charge on the day,

2. the continuing efforts to  stay in touch with media outlets and associated organisations to raise awareness and achieve the aims of the group,

3. the unsuccessful attempts to stage a Haemochromatosis awareness day at Heartlands Hospital in East Birmingham,

4. group involvement with the Liver Research Patient Involvement Programme at the Queen Elizabeth Hospital, Birmingham,

5. the Career Personal Development conference to be held in London on Monday 10^th October 2011,

6. feedback from the June 2011, UK Society AGM,

7. MP Graham Allen’s letter about Haemochromatosis to Secretary of State for Health, Andrew Lansley,

Support from the North West

Pat Waddington & Marguerite Smith from the Merseyside and North West support group gave us a talk on their experience and how we could learn from their lessons about the challenges of running a support group. These included how the North West group is structured and how they divide up the tasks involved in operating the group. Also mentioned was how individual members help to raise funds through employing their personal skills, such as making and selling cards to raise funds for the group and producing craft items in wood for the same purpose.

Pat highlighted the importance of as many people as possible mucking in to make the group work and she encouraged West Midlands members to do the same in future to help the group grow and flourish.

Following the talk from Pat and Marguerite it was decided to hold a meeting in a few weeks for all those in the West Midlands group who wanted to take a more active role, at which we could discuss who should and could do what jobs to help the group function.

 In the rush at the end of the meeting I have been told that not enough thanks was passed onto Pat and Marguerite for their efforts in coming and for giving us their time and care, so I will take this opportunity to pass on the gratitude of all those in the West Midlands for all the help we have had from the North West group since we started up in 2009.

British Liver Trust helping support groups grow

Following on the heels of Pat and Marguerite the group heard from the extremely enthusiastic and informative representative from the British Liver Trust. Lisa Brown, who had only recently been appointed as the Regional Support Group Co-ordinator for the Midlands & Wales, gave us an overview of her objectives in that post. She told us that it was intended to try and help promote and develop support groups for as many as 300 Liver related illnesses including Haemochromatosis.

Despite Lisa´s geographical remit being very large and her task equally as big she transmitted a great energy for the job and expressed the nice sentiment that ´we are sort of one big support group really´. I couldn’t agree more with that idea as from numbers can come strength.

We may all need as much influence as we can get as cost cutting cuts into the level of care we receive and this may be all the more true for illness groups like Haemochromatosis that lack the numbers of other interest groups that are less likely to be pushed to the edge in terms of care in the future.

Lisa had some good practical advice about how to try and obtain funding and help from local companies and explained that even national companies such as the major supermarket chains have local budgets to help small groups trying to help their communities. As she said if you only get the cakes or biscuits to pass around in the break at a meeting it is still a help.

The West Midlands group will stay in touch with Lisa and hopefully we can be of mutual benefit to each other in future.

Birmingham’s Irish Welfare and Information Centre and Haemochromatosis

The final contribution from our guests came from Kate McHugh from the Irish Welfare and Information Centre. This organisation offers a wide range of help and services to the Irish community and others in Birmingham.  Kate explained her specific role helping vulnerable and ill people to access services and to have choices and dignity in life. She outlined her role in sorting out practical arrangements for things such as hospital visits to making sure isolated people have their own GP. Kate also told how she can help people with other issues such as access to help with benefits and other practical help for life.

Kate explained the understanding of the place of Haemochromatosis in her work due to the large amount of people of Irish decent with the illness and expressed a desire to understand the implications of Haemochromatosis more and to promote further awareness of the illness among people she sees in her work.

Mutual help though connections

As I mentioned at the start of this report the mixture of guests at this meeting led us to a nice conclusion overall. From within the conversation and following the presentations it was decided that at some point in the medium future we would try to stage and event aimed at Birmingham’s Irish community to raise awareness about the potential for Haemochromatosis to affect their lives and the life of their relatives both here and abroad.

It was a nice coincidence that by accident we had brought together representatives from the British Liver Trust, the local Genetics Unit and local Irish welfare and of course our group and the North West group as well.

We will explore the potential of holding the type of awareness event I have mentioned and it would be really good to hear from people or organisations that have an interest in attending or taking part in some other way in such an event.

First West Midlands support group raff

At the end of our autumn meeting we some how managed to fit in our first raffle, another idea inspired by our visitors from the North West. In just a few minutes two of our members, Sue and Michelle Tooze sold enough tickets for the group to make ₤26.00, which can’t be bad. Further to that we raised another  ₤6.50 from sale of promotional items making a total of ₤32.50, which while small is encouraging given the small attendance on such a warm October day

Future raffles must be a good idea for fund raising and it was fun to do. In the confusion of the winding up of the meeting I have no idea who won what but I could hear their satisfaction and that will do for me.  

Next West Midlands support group meeting

Our next group meeting will take place at some time toward the end of March beginning of April 2012. Full details will be released closer to the date. Please find them in the December or March issue of this newsletter or, of course, contact us at anytime for details about the next meeting or any other issues raised above. I would also like to take this opportunity to remind people that support groups only survive through the active participation of those they are aimed at so please try to come along and support the next meeting if you can.

Many thanks

Kieran Lynch

Contact;

Email; info@haemochromatosisWM.org.uk

Telephone; 0121 457 89