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Gwyneth Dickinson Receives MBE

In just a decade, the Macular Disease Society has risen to become one of the UK’s highest profile charities. Now Gwyneth Dickinson, a former nurse from Okehampton, is being honoured for her tireless voluntary work as a trustee, Chairman and now President of the Society with an MBE in the New Year’s Honours List.

She joined the Society in 1997 when she was herself diagnosed with Macular Disease, a devastating condition which robs people of their central vision meaning they cannot read, drive or recognise faces.  For most forms there is no treatment.

Then the MDS was a small and struggling charity with around 4000 members and 70 local support groups.  Few people had even heard of macular degeneration even though it is the biggest cause of sight loss in the UK.  Gwyneth immediately began working to improve care for people with MD in her area.

She became a trustee of the national Society soon after and was appointed Chairman in 2002 in recognition of her wisdom, good judgement and leadership.  In spite of her own worsening sight she led the charity through a rapid expansion. Today it is recognised as the specialist organisation for people with MD, working closely with the NHS, medical professionals and other charities to improve life for people with MD.  It has the biggest patient membership of any charity in the visual impairment sector with more than 16,000 members and nearly 200 local support groups around the UK including seven in Devon, three in Somerset and one in Cornwall.

The charity also offers a wide range of free services to members and non-members including a helpline and counselling service.
The citation for Gwyneth says: “The growth of the MDS is due in no small part to Gwyneth’s determination to help other people with MD get good information about their condition and help them make the most of their remaining sight and to help them stay as independent as possible.
“She was an outstanding chairman, leading the MDS’s volunteers and salaried staff to oversee the rapid growth of the MDS into the respected voice of people with MD that it is today.”  

Her work continues today in her role as President and she is also Chairman of the Devon County Association for the Blind.
Gwyneth’s commitment to the Society grew from her own frustration at the lack of help for people with MD.
“I was devastated when I was told I had MD.  I had never heard of it and I was a nurse.  Initially I was very miserable but I am not one to let things get to me.  I think the only way to deal with it is to get more information and get on with life.”

She found it hard to get information until she found the MDS and started attending local support group meetings.

She says: “I am very proud of the MDS and its volunteers and staff.  My proudest moment came in August 2008 when the National Institute of Health and Clinical Excellence finally approved a treatment for one form of MD.  We and the RNIB had campaigned for several years for this treatment to be available so that people did not have to lose their sight. It was a great achievement. 
“I feel that people with MD now have a voice in the form of the Macular Disease Society. Life for people newly diagnosed with MD is still very tough but it is made much more bearable by the Society.”

Helen Jackman, MDS CEO said: “We are delighted that Gwyneth’s enormous contribution to the cause of people with MD has been recognised.  She is a tremendous leader and inspiring motivator of staff and volunteers and has made a huge difference to the lives of many thousands of people with MD”
Gwyneth has travelled very extensively around the UK visiting local groups and encouraging volunteers and members. Her husband, John, acts as chauffeur as Gwyneth’s sight loss has meant she has not been able to drive for some years.  She confides that she initially thought the official looking letterhead from the Queen was a “parking ticket for my husband”.