Latest News for Cambridgeshire

40th Anniversary  of the founding of the MNDA

The association has produced an interesting and informative poster showing the growth of the organisation since its formation in 1979.

Download the poster HERE.

Cambridgeshire County Council adopt MND Charter

After a lot of hard work by Fred Smith, one of the branches AVs, and Councillor Amanda Taylor, it was a pleasure to attend Shire Hall, Cambridge to listen to the full council debate the MND charter.

On Tuesday 17th July Fred Smith, Sue Halifax and myself were present when Councillor Taylor entered a motion to the full council asking them to adopt the MND charter. After a short speech from Amanda there was a secondary speech and one other that resulted in a show of hands for those in support of the adoption. It was with great relief to Fred that every single hand in the chamber went up.

This puts Cambridgeshire County Council in line with the Peterborough City Council in adopting the charter.

Big thanks must go to Fred Smith for pushing this to its final outcome along all the work he does as an AV. And of course a huge thanks go to Councillor Taylor for all her hard work in getting all the political parties to back the adoption of the charter.

The next move is to get Cambridge city council, Fenland Council and Huntingdonshire Councils to adopt the charter as well. So come on people push your local councillors to put the motion forward to your councils to adopt the charter.

Simon Crooke

Fundraising and financial support Officer

MND Association Cambridgeshire AGM Speaker: Dr Rhys Roberts

The Presentation was given by Dr Rhys Roberts, Consultant Neurologist at the MND Clinic, Addenbrookes Hospital entitled “The Cambridge MND Care Centre - an update on our move”. Dr Roberts explained that he would talk about pre and post 2005 saying that Joanna Sasson and Dr Allen set up the Centre to include other health professionals such as: Dietitian, Speech Therapist, etc. whose services were adapted to individual needs. Cases were compared pre and post 2005. They then looked at 2009/10 and the epic failure of the paperless system which became a challenge for Helen Copsey who was the MND Specialist Nurse at the time.

Since the Care Centre was set-up patient information on family members who may or may not have been diagnosed with MND has been improved. Joanna Sasson and Helen Copsey asked questions of MND patients such as ‘Did you receive answers you could understand? How long after your first appointment time did the appointment start? What is your overall opinion of the service?

Dr Roberts showed various tables and graphs showing how treatment had improved and how the improved collection of data would be used in research.

Addenbrookes Hospital has grown into a massive Centre of Bio-Medical expertise over the years which shortly will include Papworth Hospital. There is still not enough room on the site so in 2017 the MND Care Centre moved to the new Arthur Rank Hospice at Shelford Bottom.

At this site there is level access and suitable parking near the building. The Centre was purpose built with four clinic rooms and a much improved waiting area. Now the Clinic has relocated, the Care Centre staff are currently repeating the patient feedback study and have been receiving lots of feedback. There are 11 staff members with varying expertise and a Research Nurse is about to be appointed. Referrals to the Care Centre now come from a radius of up to 60 miles.

There followed a series of questions put to Dr Roberts who was able to reply satisfactorily to the majority.

Vote of thanks: David Griffiths thanked Rhys for giving up his time to come and give us such an interesting presentation and also for all the support he and his staff give to people living with MND.

Maire Collins, Secretary

2015-16 Spending the Ice Bucket Challenge windfall

This year has been a record year for expenditure, with an additional £7m research costs reflecting our Ice Bucket Challenge commitments. The project we have invested will run from one to five years and include: whole genome sequencing, MIROCALS (drug trials), biomarker studies, more studentships, PhDs and fellowships.

By investing across all our missions areas in this way we are able to develop key services including the introduction of the carer’s grant, support for benefits, dedicated support for education and also for children and young people. Once again legacy income was a significant proportion of our total income with £4.4million left directly by generous benefactors to the Association and also £93,000 left directly to our branches and groups.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262