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The Myasthenia Gravis Association Miss Brenda Reid, a Myasthenic from Rugby and a patient at The New End Hospital in Hampstead London, Approached Mr M J Lange FRCS (Consultant Surgeon at New End Hospital), for help in forming a voluntary support group (in these days described as a "Self Help Group") for Myasthenics. Mr Lange agreed, but because it was considered that MG was "so rare" it was advised that Myasthenics should seek the support of a Neuro-Muscular "Umbrella" type organisation, and the Muscular Dystrophy Group of Great Britain and Northern Ireland was approached. The MD Group agreed and the first national meeting of the Myasthenia Gravis Committee of the MD Group was formed, with Mr Lange as it's chairman. Note The New End Hospital, a former Workhouse , specialised in the treatment of MG and had clinic of some 125 myasthenics at that time . Mr Jack Piercey CBE FRCS was the senior consultant surgeon at New End Hospital in 1968 and following in the steps of Sir Geoffrey Keynes, who had successfully pioneered Thymectomy as a recognised form of treatment for myasthenic patients in the early 1940's (1942 onwards). Geoffrey's contribution was of tremendous significance, and a great personal triumph, bearing in mind that Dr Alfred Blalock had commenced a similar programme in Baltimore USA, which he then subsequently terminated . Both Sir Geoffrey Keynes and Mr Piercy were later to become vice presidents of the Association in 1976 . The MG Committee, which included a number of Myasthenics who had undergone a thymectomy by Sir Geoffrey Peggy Simpson, Brenda Cole, the "national focus" for MG . Myasthenics who wished to take a more active role were invited to become members of their local Muscular Dystrophy Branch and support their activities . This in fact did not prove very satisfactory and a few of the reasons were as follows :- * There was no understanding of MG or its symptoms as MG was completely Unknown . * The conditions (MG & MD) were totally different . * They had very little in common (perhaps the most active / numerous MD Branch members were parents of children suffering from the "Duchenne" form of MD) . * There were so few myasthenics they were totally obscured and overlooked . * But most importantly, MYASTHENICS HAD NO IDENTITY . Within a matter of months, Bert King from Leicester, who had experienced the problem first hand, in spite of excellent relations with and support from Leicester MD Branch, was seeking :- Agreement from the MD Group ) FOR THE FORMATION Support from Myasthenics ) OF AN MG BRANCH The necessary agreement and support was obtained, the inaugural meeting was held in December .
JANUARY 1969, THE MYASTHENIA GRAVIS (MIDLANDS) BRANCH BEGAN ITS WORK . MYASTHENICS ( AND THEIR FAMILIES AND FRIENDS ) WERE INVITED TO WORK WHICH THEY RESPONDED BELIED THEIR MEDICAL CONDITION ! The MG ( Midlands ) Branch grew and very quickly stretched from Lands End to John O ' Groats and beyond .
As a consequence of growing numbers and support in certain areas , there was a clear need too create more localised support and while more branches were not agreed, the "(Midlands)" was dropped from our title and the principle of area committees as an alternative to branches, was approved for the MG Branch . LANCASHIRE won the race to become the first area committee but they were closely followed by DERBYSHIRE and LEICESTERSHIRE. After that it was only a matter of time as more and more counties joined the growing MG FAMILY . We now had the MG Committee still acting as the national focus and formulating policy, with the MG branch undertaking the practical day-to-day work of caring for myasthenics, raising awareness of MG/MGA and fund raising for research.
Success of the work was rewarded with the MD Group elevating the MG Committee to full MG COUNCIL status. Rightly or wrongly this was interpreted as an encouragement to our aspirations for further development, and so work to achieve the advancement from MG Branch and Area Committees, to full MG Branches was maintained.
Once again we were rewarded with the acceptance of the principle of our MG identity and granted MG BRANCHES. In point of fact this was not easy for the Muscular Dystrophy Group, who now had an "allie " disease emerging with a different name, inside their charity, and our development continued.
The year actually heralded major problems when the M D group halted any further MG branch expansion and rejected the ratification of the proposed Branches in Somerset and North Staffs/South Cheshire . It was hoped that this would prove to be nothing more than a short delay and that following a reasonable cooling off period, once again we would be allowed to get on with our work .
A further twelve months on and discussions indicated no change, indeed a more definite "no" to any further development of the M G identity. This proved to be a very difficult period for both the MG Council an the M Branches, some wishing to continue to persuade the MD Group to change its policy and others who considered there were very clear indications that there would be no change in the MD Groups policy .
The year showed a somewhat confused picture of two MG families, one still working within the MD Group, and one seeking to register a completely independent charity, with the MG identity . In fact the BRITISH ASSOCIATION OF MYASTHENICS (BAM) was registered in 1976, and the Somerset and North Staffs/ South Cheshire were two of the first branches to be welcomed . The name was chosen to indicate it was the "myasthenic" association and a means of avoiding confusion with the MG Council. However the people who were totally confused were the hundreds of myasthenics and the growing MG family not involved with the politics of the argument .
Demonstrated the reality (and stupidity) of two separate MG organisations and by Autumn work had begun to regain some sanity and resolve the situation. This was achieved in the April of the following year when an agreement was reached between the two organisations to merge .
Following the merger in April, there emerged a united BAM putting its best foot forward again and working closely with the MD group, albeit as a " unior" partner but co-operating in the research programme and agreeing to channel its research funds through the group . The work continued for the next eight years, during which time the number of branches rose to fifty and the number of representatives close on sixty. However, this proved to be the peak of our natural growth and once the peak flattened out, without sufficient support resources, there were the inevitable signs of decline .
This was the year in which Nick Lange, Rev Jon Gilbert and i commenced a review of the Association, beginning with the basic question of whether there was any continuing need for a charity; its purposes ; their priorities; its structure ; and finally its managemen /operation . Our findings / proposed actions were as follows:- 1) The continuing need for the charity was absolute . 2) The purposes , briefly and presently described as, WELFARE , EDUCATION and RESEARCH, would be prioritised as RESEARCH , CARE and EDUCATION. The reasons for the changes were quite obvious and were necessary if we were to present both myasthenics and the public with a clear case for physical and financial support . Research - The success of the scientific and medical research programmes during the past decade had re -defined Myasthenia Gravis as an auto - immune disease, identified the Lambert - Eaton Myasthenic syndrome (LEMS) and added , improved and refined different forms of treatment for Myasthenics which had completely transformed their quality and expectancy of life. MG was 'THE' success story of the neuro-muscular research projects, and more was on the way, including a brand New MG Centre at Oxford. This was a totally successful "product" which we could market and sell to the public . Care would continue to be the top priority within the association, as was our commitment to the development of a nationwide network of branches capable of providing care for our MG family Of the medical profession and the public in general would continue 365 days a year, but supported with specific projects on a properly planned/executed basis.
The growth of the Association dictated that it be co-ordinated on a day- to-day basis and Keynes House was very kindly provided, rent free, by the Liversage Trust in Derby.
M G Council extend its commitment to the Nationwide Care Network by appointing Jackie Wilkinson as Development Director with responsibility for the development of new Branches, together with the support and development of existing Branches and Representatives.
BAM given a new name and logo, Myasthenia Gravis Association and MGA launched in April at the National Meeting of Myasthenics at Oxford.
Development Director implements new Regional structure of Regional Councillors and Regional Care Co-ordinators
Work commenced on the first "Five Year Plan" - proposes Fundraiser to be recruited to obtain financial support of Development project which could then sponsor up to eight Regional Organisers. This would be totally self-financing, create a stronger MGA and release general funds for research.
Association accepts principle of the Five Year Plan, but endorses recommendation for a limited audit by external consultants.
M G Council accept Consultant's report which advises fundraising policy be broadened to include "Research", which is of such high quality it is readily marketable. Consultants also endorse M G Council policy statement that improvement to Charity management is required to meet new legislation emerging from 1992/93 legislation. Preston Keeling, Director recruited in December 1994 with the remit to further improve the management/operation of the charity and make recommendations/take action to increase the national income, and where possible Branch income
MGA achieves incorporation on 27th March, but MGA (Old) continues for receipt of monies/legacies left to the unincorporated charity.
MGA continues to jointly fund research with Muscular Dystrophy Group of Gt. Britain, but now becomes grant Makers to Medical/Scientific Institutions, in its own right, A new logo (albeit a very old description of MG) is added, that of "The Rag Doll", in the hope that it will help market more of our promotional goods. |
