MND Association. Norfolk, Norwich and Waveney Branch
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Annual General Meeting 2014

 

 

The 19th Annual General Meeting of the Norwich and Waveney Branch of the MNDA was held on Sunday 27 April at St. Andrew's Church Hall, Eaton, Norwich. The meeting was attended by around 40 people. Sue Heal took some photos at the event, which you can see below (and apologises to anyone who may have been missed out!). After the formal business of the AGM we enjoyed a hot lunch prepared by the outside caterers from Swanton Morley Butchers and Delicatessen.

 

Click image to enlarge:

 

We were pleased to welcome Barbara Howe as our guest speaker. Barbara has been a trustee for the MNDA for six years. She has worked in the NHS for more than 20 years and has an extensive knowledge of both planning and delivering health services. In one of her roles she was lead commissioner for neurosciences in London and was a member of the reference group that developed the National Service Framework for neurological conditions. She is currently working for the National Team for NHS England and is responsible for planning specialised services at a national level.

 

Barbara gave us a short introduction to the MNDA's recent achievements, and plans and priorities for 2013-16.

 

One of the key developments she talked about was the announcement that NICE (The National Institute for Health and Care Excellence) has agreed to lay down standards for the care of people living with MND. They will be producing a clinical guideline on MND for use by the NHS in England and Wales by 2016. The significance of this is that once NICE have agreed guidelines for the care of people living with MND all hospitals will be expected to deliver such care.

 

Barbara also highlighted the development of the population based clinical register. This register of all people in England, Wales and Northern Ireland with Motor Neurone Disease (one already exists in Scotland) will take several years to develop. It has the potential to become an important resource for research.

 

As an association we are already involved in lots of laboratory based research. There is now a push to increase the amount of research into care issues – those things that will help people living with the disease now and in the future to limit their symptoms and improve their quality of life. Barbara gave current examples of care research – the work in Sheffield on saliva management and the development of an MND collar.

 

If you would like to read more about Barbara's talk click here to see the presentation.

 

We would like to welcome Esther Cockram, pictured below, who has joined the team of Neurological Nurse Specialists at the Norfolk and Norwich University Hospital. She attended our AGM along with Rachel Rendell one of our well-established neurological nurses. It was good to see them both.

 

 

It was good to be joined at our AGM by Michael Davison, son Adam and mother-in-law Jean shown in the first photo. Michael presented the cheques / cash generously donated in Sara’s loving memory by his friends and colleagues who between them contributed the fantastic sum of £8,793.81. The next photo shows Michael with Cilla Godfrey, one of our committee members.

 

Sara is pictured in the third photo on her wedding day, 20 February 2009. Sara was diagnosed with MND in July 2011. The disease progressed very quickly with Sara being wheelchair bound from October 2011, losing her speech in December 2011 and being unable to eat from November 2012. Michael says, “Sara was such a gregarious, fun loving and fit, and wonderfully attractive lady and so sadly taken on 7th February this year”. Her funeral was held on what would have been their 5th Wedding Anniversary. The disease has had a huge impact on the lives of those that loved Sara especially her mother Jean, her two step sons Adam and Tom and of course Michael her husband. This has been a tough journey for all the family.

 

Michael paid tribute to the help that Sara and her family received from the Norwich and Waveney branch. This included a contribution towards a stair climber. In 2012, Michael and Sara had planned a holiday; at the last minute it became apparent that more care would be required than planned. The branch contributed towards the cost of an additional carer to accompany them. Michael said, “This support has been excellent both financially and also the warmth it left me with as Sara’s main carer in not thinking you were on your own.”

 

Yet despite the difficulties as a family they made things happen with Sara having two cruises in the time she was living with MND. They continued going to watch Norwich City play as season ticket holders until her passing. Somehow Michael was able to keep working and the children kept visiting despite the adverse circumstances. Sara had a great team of carers managed by Michael using a Personal Health Budget, this was challenging but represented an improvement on the use of agencies with high staff turnover. It is good to reflect that they live on knowing they could have done no more.

 

Michael does not intend to give into self-pity. He plans to run the London Marathon on 26th April 2015 (assisted by his brother Neil!). He already has a guaranteed place to raise more money for the MNDA with a target of £3,000. Neil ran the London Marathon in 2012 raising £3000. Robert Swann, a good friend, and his daughter Laura raised £1000 having completed the great South run in October 2012. Further sums were raised by Michael's company holding baking days and his neighbour selling raffle tickets for a quilt made by her sewing club. He also made donations instead of sending Christmas cards in 2011. This will take the total raised by Michael, friends and family to over £16,000 for which we are most grateful. We will add details of how you can sponsor Michael to our website when they become available.

 

 

Shirley Basey-Fisher gave a cheque to the branch for £1343.45 being the proceeds of a '60s Dance held at Lingwood Village Hall on Saturday12 April, 2014. Our thanks to David Cox and Mick Patterson for organising the dance. Shirley has kindly provided two photos taken on the night.