MND Association. Norfolk, Norwich and Waveney Branch

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FIGHTBACK

The branch publishes Fightback, our newsletter, three times a year. Its contents include reports of recent events, notice of future events in aid of the MNDA, a thank those who have raised or contributed funds for the work of the branch and news from National Office.

Disability Living Allowance (DLA) is ending. Details here

 

VAT relief for people with disabilities. Details here

 

31 January Launch of the Norfolk MND Care and Research Network, in the presence of the Royal Patron of the Motor Neurone Disease Association, HRH The Princess Royal

Around 80 guests attended an event at the Norfolk and Norwich University Hospital. Guests included MND Association volunteers and funders, local councillors and dignitaries, nurses, therapists, researchers, fundraising supporters, senior hospital staff – and most importantly people in our area living with motor neurone disease and family members.

 

HRH The Princess Royal spent time speaking with everyone who attended; we were all impressed by the time and attention that she gave to each of us as she listened to what we had to say. The reception was followed by a series of speeches in the Benjamin Gooch Theatre. Sally Light spoke first giving a brief description of motor neurone disease, and saying a little about the history that led to the launch of the 21st MND Care Network. She highlighted the role of Dr Dick, one of the co-directors of the new Network, who spent 16 years working to bring a Care Network to Norfolk, and the importance of the money raised by Credit Suisse which has helped fund the Network. Credit Suisse adopted the MND Association as their UK Charity of the Year Partner 2017 after one of their Project Managers was diagnosed with MND in 2015, and raised a staggering £740,000 for the Association. Sally then introduced Dr Richard Kell, a GP from Halesworth, who has now retired following his diagnosis with motor neurone disease.

 

Dr Kell gave a very moving speech in which he shared how he recognised his symptoms having met five or six people living with MND during his career. He explained how his hoarse voice had developed a slurred characteristic, which could easily be mistaken for the effects of having imbibed rather more alcohol than was good for him, and described how his emotional lability meant that he cried easily if told something sad. In addition to his work as a GP he was chairman of Halesworth Community Nursing Care Fund, which has already raised £700,000 to build a new support centre in Halesworth to provide help for people who have been diagnosed with life-limiting illnesses. He noted the irony that he might be one of the people to benefit when the facility is built!

 

HRH The Princess Royal then gave a speech that demonstrated her intimate knowledge of the work of the MND Association, and of the challenges faced in a rural county which she knows well! After a splendid speech that had many of us smiling – particularly when she quipped that it is often said that Doctors make the worst patients – she unveiled the plaque marking the formal opening of the Norfolk MND Care and Research Network. Mark Davies, Chief Executive of NNUH, gave a short speech welcoming the opening of the new venture before inviting HRH The Princess Royal to sign the visitors book. She commented that there did not seem to have been too many visitors since her mother officially opened the hospital in February 2004! Whilst The Princess Royal left to attend another engagement the guests were invited to enjoy a buffet lunch.

 

We are very grateful to Dr Dick, Helen Copsey, Lindsay Goward and the VIP team at the MND Association for all their hard work organising such a wonderful event.

 

Background: The Norfolk MND Care and Research Network serves the populations of Norwich, Norfolk and Waveney Valley, and is based out of three hospitals: the Norfolk and Norwich University Hospital in Norwich, the James Paget Hospital in Great Yarmouth and The Queen Elizabeth Hospital in King's Lynn. Staff overcome the geographic dispersal of people living with motor neurone disease in the region by rotating between the three centres, taking their expertise direct to people living with MND as much as possible. On 24 January the first new MND clinic was launched at Cromer, and on 25 January the second satellite MND clinic was launched at Beccles hospital. The network takes the expertise of the specialist staff direct to people living with MND.

 

Thank you to Hugh Thompson for taking the photos and to the VIP team for making them available.

 

iceniPost article here.    Eastern Daily Press article here.