Cambridgeshire Branch

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Highlights in this issue… page 3 page 4 page 5 page 6 page 7

Summer/Autumn 2015

Volunteering Fund Project Wheelchair Project Update Facebook June Get Together Care Service Navigators Association Volunteering Fund Showcase Jumpfest and Colour Run Grafham lunch Haverhill Lions

MIROCALS: New MND clinical trial announced The MND Association is backing a new clinical trial, known as MIROCALS, which will aim to start recruiting 216 people living with MND in the UK and France in autumn 2016. The Modifying Immune Response and Outcomes in Amyotrophic Lateral Sclerosis (MIROCALS) study will aim to investigate existing drug interleukin-2 as a potential new treatment for MND. It’s a joint clinical trial between France and the UK, supported by an award of €6million from the European Commission, with additional funding of €0.5million from the French government and a further €0.5million currently under consideration from the MND Association. High dose Interleukin-2 has been used for many years to treat cancer. However, it has been proposed that at much lower doses it may have benefit in treating a number of immunological conditions. Changes to the immune system have been linked with the speed of disease progression in MND, so if an altered immune system does plays a damaging role, then restoring this imbalance could be beneficial. The two scientists behind this project are renowned MND researchers Prof Nigel Leigh (Brighton and Sussex Medical School) and Dr Gilbert Bensimon (Hôpital Pitié-Salpétrère, Paris). Prof Leigh and Dr Bensimon will begin working on the essential groundwork from September 2015, including a small pilot study in France, before the main trial can begin recruiting participants in autumn 2016. Director of Research Development at the MND Association, Dr Brian Dickie, said: “The Association is delighted to be involved in this clinical trial, which brings together two leading clinical researchers who both have a wealth of experience in designing and implementing clinical trials in MND. “Since interleukin-2 is already well studied, we can monitor the effect of the drug on the immune system using welldefined biomarkers that will allow us to ‘individualise’ responses to treatment, as well as study some of the new biomarkers that have been linked to disease progression. This work will be done by leading MND biomarker researchers in the UK, Italy and Sweden.”

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Volunteering Fund Project Updating Report by Pauline Matheson The third and final year of the volunteering fund project is well underway. Volunteers known as Care Services Navigators (CSN) have been working directly with people affected by MND, since June 2013, to empower them to become involved in care decisions and service design to ensure their specialist and complex needs are met. This is quite a different role to that of our Association Visitor (AV). The CSN will only be involved with a person with MND and their carer long enough to ensure they can find their way through the health and social care system. They will refer for ongoing AV support, where available, for more long term support and information.

Your feedback is extremely important as this will enable us to develop the portal further, so please share your thoughts, good or bad, with Melanie Smith, Forum & Support Site CoOrdinator at [email protected] The online professionals’ forum is going from strength to strength and so far 470 different health and social care professionals have signed up. The review of information for health and social care professionals began in March 2014 and focuses on the creation of high quality resources based on robust evidence with expert review. The range includes: • •

Where we were in Oct ’13

Where we are in Aug ‘15

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Three CSNs

Eight CSNs

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21 people with MND supported

135 people supported

226 hours volunteered

1680 hours volunteered

with

MND

If you would like to speak to a CSN please contact Liz Cooper/Lindsay Goward at [email protected] By using technology more effectively the project has created a new way of providing accessible information to people affected by MND through an interactive, web-based service directory. The service directory is based on the ‘Living with MND Guide’ produced by the Association and provides a wealth of information on health and social care services in Peterborough, Cambridgeshire, Norfolk, Suffolk and Essex. The services directory at mndsupport.org

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GP booklet Information sheets on a wide range of topics MND respiratory pathway and AAC pathway Recommended reading lists Information for care workers booklet

In April this year, as part of the project, the Association was awarded the Investing in Volunteers quality mark. The plaque was unveiled in June by HRH Princess Anne at an event attended by members of the Cambridgeshire Branch.

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Wheelchair Project Update

June Get Together at David Rayner building, Scotsdale’s Garden Centre, Cambridge

The Institute of Health and Wellbeing at the University of Northampton is conducting an evaluation of the wheelchair project. As part of the evaluation the University is seeking feedback from wheelchair users or carers on their experiences of mobility assessment and wheelchair provision from their local wheelchair service.

We held our usual social afternoon at this popular venue on a warm sunny afternoon. There was a good gathering with lots of socialising and catching up over the usual refreshments and cups of tea. We were pleased to have a return visit from Pauline Matheson, Project Manager for the Volunteering Fund Project, to give us an update on what was happening on this front and to take any questions from members. Pauline also took the opportunity to let us know what is happening on the wheelchair project.

This will take the form of a questionnaire, which should take 10 minutes to complete. We are keen to have as many wheelchair users as possible participate as it will be of great value not only to our evaluation but also to gain more information on wheelchair provision in general.

We also heard from Sue Hallifax, an Association Visitor, and Ann Porter, a Care Services Navigator, on what their respective roles involved.

northampton.onlinesurveys.ac.uk/wheelchairpr ovisiononlinesurvey If anyone has any questions about wheelchairs or are having a problem with their local wheelchair service then please send details to [email protected]

This was another very informative and interesting afternoon and Pauline will be returning with a final update on this project in the New Year. Cynthia George

If you would like any more information on either project please contact Pauline Matheson at [email protected]

Facebook There is now a Motor Neurone Disease Cambridgeshire Facebook page, which has been set-up and is run by Jacqui Rainbow. It is an informative page for anyone who has an interest in MND. If you have any news or events to promote to raise funds for the branch, or other relevant information to raise the profile of the Cambridgeshire Branch, then Jacqui would love to hear from you. You can contact her at [email protected]

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through the jungle of services as well. We have also just started attending the Papworth MND Clinic on a rota basis alternating with the Addenbrookes Care Centre Coordinators, so you might see one of us there.

Care Service Navigators You will probably have heard about the new role of a Care Services Navigator and you may even have met one of us already. We come complete with compass, life belt and whistle ready to navigate the murky waters of the statutory services on behalf of people affected by MND.

Brenda Parkes

Association Volunteering Fund Showcase On the 3rd June, about 70 people affected by MND, volunteers, invited guests and MND Association staff had the privilege of meeting HRH Princess Royal at a MND Association Volunteering Fund Showcase event in London. HRH has been very supportive of the MND Association in her role as Patron. As well as HRH and Sally Light’s speeches, Max and Ann Porter spoke about their personal experiences and Charlie presented HRH with a bouquet on behalf of us all.

Eastern England was chosen as a pilot area for CSNs and has been funded for 3 years by a Department of Health Grant. Pauline Matheson (National Office) is the Project Leader with Liz Cooper (RCDA) recruiting and supervising all CSNs. I became the first person to enter the choppy waters of navigation but have since been joined by Ann Porter, Isobel McCarthey, Jo-Ann Dawson and Carole Minney. Two more volunteers are about to be “launched” in North Norfolk.

Brenda Parkes

We’ve now passed the halfway stage of the pilot and things are looking promising for a roll-out of the role at the end of the project. It’s been a learning curve for us all to see how and where we can be used to best effect and we are still learning. I like to think of it as “joining up the dots” – making sure each person living with MND and their family has all the relevant contacts and information, whatever stage they are at. As you will all be aware, Adult Social Care, the NHS and the Benefits Agency are all undergoing huge changes at the moment and it takes time and effort to find out how they join up. Living with MND is hard enough without having to find your way

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Jumpfest, June 21st, Sibson Aerodrome, near Peterborough.

Sky dive and Colour Run I am very lucky to have such a supportive best friend and her family, who live in Worcestershire. As well as visiting me regularly they have taken on some new challenges to raise awareness of MND and funds for the association.

I very kindly “volunteered” my husband and son to take part in the MND Association Jumpfest, on Father’s Day. David has a “special” birthday later this year and Simon had one last year so what better way to do something memorable and raise money for MND Association at the same time.

In June my goddaughter Gab Crew and her sister Fran did a sponsored sky dive at Sibson Air Field and raised £1619.50 for Cambridgeshire MNDA.

MND Assocation skydivers and supporters were much in evidence at Sibson. Quite a few were from Stamford but Tessa from our area and her friends were there too.

In August my best friend Clare and her daughter Fran, son Jason and his girlfriend Caroline took part in the Birmingham Colour Run raising a further £550. Tessa Johnson

Unfortunately the wind wasn’t very conducive to jumping so many of the flights were delayed – extra time to get even more nervous – but all was well in the end and all landed safely. David and Simon have raised about £2000 between them so well worth doing. A big thank you to all who sponsored them. Brenda Parkes

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prizes gifted from local businesses and generous people. One highlight was a family of collectable Meercats, complete with their certificates of authenticity, which was auctioned for £85.

Grafham lunch Saturday June 27th In April, I was approached by David Niven House and asked if I would represent the MND Association at a fundraising lunch to be held at Grafham Village Hall.

It was a very happy family day, proving that with efficient organisation a family can successfully raise a large sum of money for their chosen charity, in this case the MND Association. The final sum raised was an amazing £1600.

John Morren and I attended the lunch on a beautiful day in June. Immediately we arrived we were welcomed by Diana Bass with whom I had been liaising prior to the event. She was organising the day with her husband Daniel, mother and father Lizzie and David Hart, and her aunt Ruth, who had sadly lost her husband some 13 years ago to MND. This family history has encouraged the whole family to be regular fund raisers for the MND Association.

Many thanks for everyone’s hard work. Pam Wilkie

The hall was buzzing with families and their children, who were well catered for with a bouncy castle outside the hall. The lunch consisted of a Pimms or soft drink, a ploughman’s and much more, which everyone tucked into after a few words of thanks and a brief on MND. It was particularly enjoyable for me as friendships were rekindled as I had worked with Lizzie years ago in the NHS, and a family with whom I had had been an Association Visitor 3 years ago was also supporting the event. John chatted amongst the people attending the lunch, answering many questions and spreading the awareness of MND. After the lunch, a raffle was held with many

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Haverhill Lions Club Roger Widdecombe from David Niven House asked if a representative from the branch could attend a Haverhill Lions Club Dinner to receive a cheque from the outgoing President. On Friday 11th September Maire Collins, our Secretary, and I went along in the evening and enjoyed a hot buffet with members of the Club. During his term of office the outgoing President, Len Russell, had nominated the MNDA Cambridgeshire Branch as one of his charities along with the Addenbrooke’s Charitable Trust and the First Responders, who also had representatives of their charities there. We received a cheque on behalf of the branch for £350. Unfortunately Len Russell could not be there on the night due to personal health problems but his wife presented the cheque to us along with the current President. The Club made us feel welcome in a very friendly atmosphere and it was interesting to hear about some of the activities their members get involved with to raise funds for the local community – Easter Egg hunts, barbeques at local events, Father Christmas going round to local events are but a few; obviously a lot of time and effort is put in to their fundraising. Many thanks to Haverhill Lions Club for their support. Cynthia George

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Cambridgeshire Branch

Summer/Autumn 2015

Branch contacts Care and support Chris Glover 01733 380208

General Enquiries / Branch Contact Address Cynthia George 01954 202095 / 07515 534430 18 Over Road, Willingham, CB24 5EU MND connect

Volunteering Development Co-ordinator Neil Penson 01604 611893 [email protected]

03457 626262 [email protected]

Financial Support Coordinator Simon Crooke 07551 575752 [email protected]

Regional Care Development Advisers Liz Cooper 0345 375 1827 Lindsay Goward 0345 375 1829

Branch Newsletter Editor Anthony Flynn [email protected]

MND National office 01604 250505 [email protected]

Future Get-Togethers… Date

www.mndassociation.org Registered Office: Motor Neurone Disease Association David Niven House 10-15 Notre Dame Mews Northampton NN1 2BG Registered charity number 294354

Find out more about Cambridgeshire branch

[email protected]

the

Visit the branch website at www.mndassociation.org/cambridgeshire where you can discover more about what we do and the support available. There’s information on meetings, fundraising, contacts and latest news about what’s happening in our county.

Place

Oct 28th

Huntingdon, MS Centre

Dec 3rd

David Rayner, Cambridge