MS Society

My MS My Needs Survey

The MS  Society has launched the My MS My Needs survey.  It is the largest survey of people affected by multiple sclerosis (MS) in the UK.  This year, for the first time, they are also running the MS family & friends survey, alongside My MS My Needs.  Electronic links to these surveys are as follows (and flyer attached);

My MS My Needs:

MS Family & Friends:

 There is also a blog about this

The surveys are open until 31 May 2019.

Yvonne Trace

Regional External Relations Officer (Greater Manchester, Lancashire & South Cumbria) | MS Society
DD: 0203 828 6854
Switchboard: 020 8438 0700
Mobile: 07715 428 177

Cumbria MS Services – Success!

A number of our members have written to Stephen Eames CEO North Cumbria Hospitals Trust and Cumbria Partnership Trust about their concerns to protect MS Services in Cumbria.

This is a typical letter:

I am contacting you in connection with the Cumbria MS Nurse Service, which at present is at severe risk.

Two out of three of the band & MS Specialist nurses in Cumbria are presently working their notice periods after resigning.  The third nurse is due to retire this year, which potentially will leave no MS Nurse Services across Cumbria.

There are estimated to be 820 people with a diagnosis of MS in Cumbria and a further 50 people diagnosed every year, to have no MS Nurse Service to support with symptom management and the ongoing prescribing and monitoring of disease modifying treatments would be unacceptable and dangerous.

I would be grateful if you could reply to answer the following questions:-

  • What are the recruitment and succession plans to guarantee the MS Service continues across Cumbria, ensuring that patients do not experience a decline in the high quality of service?
  • How can people affected by MS (your patients), be involved in shaping and influencing the service to ensure caseload, pathways and clinical support is improved? This will support the retention of the new MS Nurses.
  • Does Cumbria NHS Partnership Trust presently have any plans to strengthen its Neurosciences division, which will support stability for the MS Nurse service?

MS is a complex condition, requiring personalised support throughout its progression.  Individuals experience a wide range of symptoms at different times, making it unpredictable and the need for specialist support invaluable.  I would like to take this opportunity to thank the present three nurses, whose skill, knowledge and compassion have supported many people affected by MS to an exceptionally high standard.  They are going to be a great loss to Cumbria’s MS Community and Cumbria NHS Partnership Trust.”

We are pleased that the following response was sent from Fiona Dixon on 19th March and that a local member of the MS Society assisted last week with the interviews for new staff:

Many thanks for taking the time to write to me in connection with the provision of MS care in Cumbria. We have also been contacted by Angie Stewart from the MS Society and have provided her with the following responses to the questions you have raised in your email dated 18/03/18

What are the recruitment and succession plans to guarantee the MS Nurse Service continues across Cumbria, ensuring that patients do not experience a decline in the high quality of service?

As a Trust we have been aware of the need to look at MS staff succession planning, and with this in mind, we were able to recruit a bank nurse who is an experienced MS clinician who has been working alongside the existing Band Seven Nurse in the South. We are very hopeful that she will apply for the substantive post and be successful. We have also been reviewing skill mix and are looking to recruit two part time staff for the South which will give the staffing resource more resilience as opposed to the single member of staff we presently rely upon. The advert for the replacement post is already published.

In the North, we have been working hard to develop one of the existing band six Nurses with a view to succession planning, and she has participated in relevant training over the last twelve months. It is hoped that she will apply and be successful in obtaining one of the, soon to be vacant, posts. The current advert also includes the option for a band six development post which would work alongside the remaining band seven until she retires in October time. This will provide increased capacity during this period of transition. We are also looking to support the Consultant Neurologist, through a Job Plan review, to allow him greater opportunity to provide support to newly appointed staff, as they settle into their new roles.

 How can people affected by MS (your patients), be involved in shaping and influencing the service to ensure caseload, pathways and clinical support is improved? This will support the retention of the new MS Nurses.

We have a policy of co-production in respect of any significant planning processes or service changes in respect of all our services. With regard to the recruitment to the vacancies described above, we have already contacted the MS Society and asked for representatives to join us for the interview process.

In addition, we are reviewing how we can make the MS service more sustainable going forward and are planning to meet with the Consultant Neurologist and the existing MS Nurse team to look at how we might best manage the increasing demands on the service. Any significant proposed changes to the configuration of the service, or MS pathways, will be shared with the Neuro Alliance meeting for advice, consideration and comment.

Does Cumbria NHS Partnership Trust presently have any plans to strengthen its Neurosciences division, which will support stability for the MS Nurse service?

Work is underway with our Commissioners regarding how the MS service should be commissioned and provided in the future; to ensure it is stable, resilient and meets the needs of the local population. These discussions involve closer linkage with the relevant tertiary providers and we are in the early stages of these discussions at the moment. Regular updates will continue to be shared at Neuro Alliance meetings.

I would like to thank you for raising your concerns directly with us and I hope my letter provides a satisfactory response to the issues you have raised.

Yours sincerely

Fiona Dixon

Senior Network Manager, Autism Diagnostic Service; Acquired Brain Injury Service; Booking Centre & Neurosciences Service”

Thanks Fiona for working closely with the Alliance and our members to ensure robust services in Cumbria!

Barrow neuro drop in sessions update

Barrow planning meeting

Members of the Cumbria Neurological Alliance are developing a neuro drop-in centre for people living with a neurological condition, their families and carers. It will be based in the Hindpool Centre, Barrow in Furness.

Charities and specialist neuro therapists working across South Cumbria came together this month to plan the programme which starts on 2nd November. The first groups will be hosted by Parkinson’s UK, Headway South Cumbria and the MND Association.

Dr David Footitt Consultant Neurologist said “I was delighted to hear that Cumbria Neurological Alliance has been able to secure support to run regular drop-in sessions at the Hindpool Community Centre. Whilst patients and carers affected by some of the commoner neurological conditions benefit from local support groups, too many people feel isolated by their condition and unable to link with others facing similar challenges. There are many common experiences shared between people with Neurological conditions. This initiative provides people with the opportunity to share, support and learn from one another whilst enjoying social interaction and a range of activities. This concentration on a core of well-being, supporting independence and maintaining social contacts is key to improving outcomes for my patients. I trust that we in the NHS will be able to support it to succeed and flourish.”

Dr David Footitt Consultant Neurologist Cumbria

The initiative has been supported by Dr Farhan Amin, GP and member of the Morecambe Bay CCG and Les Graham public health locality manager with Cumbria County Council.

Check out the programme

Enquiries to Glenys Marriott Chair Cumbria Neurological Alliance at Twitter @cumbrianeuro

Colin from the ABI team with Christine and David Wilson from Headway South Cumbria


David Schofield


The team from BIRT Barrow

More photos to come!

Allerdale Branch of the MS Society Conference 14th May 2017

I was delighted to be asked to chair this education conference run by the Allerdale Branch of the MS Society.  There was an excellent turnout of over 70 members and the venue was the delightful Hundith Hill Hotel.

The programme included an excellent talk about the Brain Bank by Dr George Gveric from Imperial College.

You can

His presentation was followed by Dr David Footitt Consultant Neurologist from the Cumbria Partnership NHS Foundation Trust.  David was well known to the patients in the room and has been at the forefront of developing services for MS in Cumbria.






David described the choice of drugs currently available for people with MS and there were lots of questions afterwards.

Yvonne Booth from 10 in 10 an amazing fundraiser showed an inpirational video about her fundraising and her husband Duncan.

Do think about registering with 10 in 10 to raise funds for MS

Julia Walker spoke next about her work with Lake District Mobility.  Her project offers amazing access in the National Park to people with disabilities, and we are going to support her and work jointly on developing the range of Changing Places available.

 Julia Walker

We finished the day with another inspiring talk about the Calvert Trust Kielder by Karen Diamond.


Contact details for Cumbria MS groups

We had a break for afternoon tea which was most delicious and time for lots of networking.

Many thanks to Hilary Windsor and all the team for inviting me, and we look forward to seeing you at our Cumbria Alliance meetings.


MS Society survey on wheelchair services in South Cumbria

Yvonne Trace Regional External Relations Officer (Greater Manchester, Lancashire & South Cumbria) of the MS Society and one of our committee members is carrying out a survey about wheelchair services in South Cumbria.

If you or someone you know lives in South Cumbria and uses a wheelchair please read this

wheelchair flyer

and complete this survey

Your details will be kept in confidence but we want to get as many views as possible.

Image result for wheelchair images




Multiple sclerosis advisory panels

The MS Society is creating advisory panels to inform its positions on public policy, and is looking for people with specific expertise or insight into the areas of health, social care, medicines, welfare or employment policy. Panel members will need a willingness to contribute their knowledge and insight into services and support that is relevant to people with MS. More information about the roles can be found here:

Meeting in Workington 12th June 2014

We had a useful meeting in Workington – the first time we had visited West Cumbria, but not the last.

Meeting at the new Fire Station – an excellent venue for the 3rd Sector – we attracted an excellent discussion group.

We were delighted that Angie Stewart Regional Coordinator for the MS Society could step in at the last minute as our original speaker Peter Wearing had to attend an NHS England meeting in Birmingham.  Angie gave an update on the national strategy which led to some good plans for how we can extend our influence to support people with neurological conditions.

Some of our committee members at Workington

Some of our committee members at Workington.  Eric Tiffin, MND Association, John Spark, Epilepsy Society member, Angie Stewart Service Development Officer, N of England MS Society, with her support dog Theo, Glenys Marriott, chairman Headway South Cumbria, Dr Vincent Foxworthy Headway North Cumbria, Nicola Simpson our treasurer from A Chance for Life, with member John Crofts MS Society Allerdale.