Cafe Neuro presentation for ICCs

Cafe Neuro

Café Neuro Barrow for ICC

I was delighted to have the chance at the Morecambe Bay ICC conference on 14th March in Kendal to share our work about the Cafe Neuro in Barrow.

I’ve attached my slides and it was really good to get positive feedback and interest from a wide variety of GPs, community staff and social workers.

It was also an opportunity to support our colleagues from Kendal ICC with whom we work closely as a 3rd Sector partner. Across the Bay there was an enormous amount of innovation addressing local problems and it will be good to see how these develop over the next year.


Also time for a catch up with Joy Wharton from Morecambe Bay Trust here with Alison Nicholson.  Joy has offered to run a Talking about Death session for us at Cafe Neuro which will be really useful.

Joy and Alison

It was very special to have Aaron Cummins, the incoming CEO at UHMBT Morecambe Bay Hospitals Trust, join us and talk about the importance of Better Care Together and integrating services




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!

Thank you as 2017 draws to an end

We are already planning a weighty programme for 2018 but as 2017 draws to a close I want to thank our amazing committee and members who have turned out not just across Cumbria, but across the north of England, Greater Manchester and Cheshire to attend our meetings.  Support and attendance from Regional officers from the main neuro charities has been crucial to our work and I am delighted that they feel it is worth their long journeys to attend our meetings.

Those members who attend with long-term neurological conditions make all our endeavours worth while, and it is for them and the hundreds of others in Cumbria that we work to enhance services.  They keep us grounded and highlight what really matters to them.

We aim also to support our clinical colleagues, who care deeply about the work they do, and bring their expertise to our meetings so we can solve problems together.  We have been pleased to support Dr Jitka Vanderpol with her groundbreaking work on headaches and the addition to our committee this summer of Consultant Neurologist David Footitt has been an added bonus.

Dr David Footitt Consultant Neurologist Cumbria

We have spent 6 long years gathering information, working in partnership and making neurological services our priority.  We now feel on the cusp of something very exciting and believe that the needs of people living with a neuro condition might finally be prioritised and addressed.  Stephen Eames CEO NHS in North Cumbria and CEO Jackie Daniel UHMBT and Andrew Bennett Morecambe Bay CCG and in South Cumbria have received our response on how specialist neurological rehab. should be structured and we are keen to work closely with them to co-produce new strategies

Co-production, co-operation and critical friendship are our aims.

The TLAP National Co-production Advisory Group says the following about co-production:

‘Co-production is not just a word, it is not just a concept, it is a meeting of minds coming together to find shared solutions. In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them. When co-production works best, people who use services and carers are valued by organisations as equal partners, can share power and have influence over decisions made’.

(See also )

As always, we want to thank Louise Chance at A Chance for Life for her unstinting contribution to both the Alliance and Headway groups.

We have regular and valuable advice and correspondence from Jozi Brown at Cumbria CVS and strongly recommend 3rd sector groups become members.

Our latest venture – Cafe Neuro in Barrow is underway and like all new ventures we are learning as we go, but I do hope that anyone living with a neurological condition will feel able to come and join in. We have appreciated the help we have received from Dr Farhan Amin, Furness GP and Lesley Graham Public Health Manager to get this started.  You can find our programme at

(Above) Barrow planning meeting for Cafe Neuro with representatives from Headway, MNDA and MND Care Centre at Lancashire Hospitals Trust, MS Society, Stroke UK, Cumbria University, CPFT Parkinson’s Disease, A Chance for Life, Furness Carers and UHMBT.

The Cumbria Neurological Alliance is pleased to be a branch of the National Neurological Alliance which is the only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition. Together we work with our member organisations to campaign nationally and locally to ensure better services and outcomes for all those with a neurological condition.



If you would like to join us just drop me a line at  

Our diary dates for 2018 are on this website and we look forward to making great progress in 2018.

With best wishes for a Peaceful Christmas

Glenys Marriott

Chair Cumbria Neurological  Alliance

Image result for peaceful christmas

December meeting at A Chance for Life Penrith

There was an excellent turnout for this important meeting and we were pleased to welcome people with neurological conditions, colleagues from Newcastle Hospitals, the main neuro charities, community therapists and consultant neurologists.
We received a presentation of the proposals for specialist neuro rehabilitation in North Cumbria and unanimously agreed to respond to Stephen Eames CEO at North Cumbria Hospitals Trust and Cumbria Partnership Trust.
We are pleased to see this piece of work being given priority and look forward to being able to co-produce the new strategy.
The response was also shared with Jackie Daniel CEO University of Morecambe Bay Hospitals Foundation Trust and Andrew Bennett CEO Morecambe Bay CCG, as the content is equally important for services in the south of the County.
I was delighted to receive this  message in response from Jackie
Dear Glenys,
Thank you for copying me into this.  I can confirm that we are fully committed to supporting the priorities and plans for specialist neuro-rehabilitation.  It is really good to see the progress you have and continue to make.”
There has been a great deal of development in the last couple of months and we are delighted to have started the Cafe Neuro in Barrow.  This is our new neuro drop in centre supported by our joint neuro charities.  We have had the first 3 sessions and last Thursday reviewed what we had learned.  We have started an excellent open access room with a range of information available – do drop in to the Hindpool Community Centre to see what is available.

New Stroke Strategy for Morecambe Bay

I was delighted to contribute to the launch of the new stroke strategy for Morecambe Bay and I spoke about the role of the 3rd sector in preventing stroke and supporting families and patients after stroke.

The Bay Wide Stroke Prevention programme launched earlier this month at Café Ambio, near Crooklands. The programme has been launched by Bay Health and Care Partners to bring partners together to help to reduce the number of strokes across the Bay by 50%.

This ambitious project follows in the footsteps of good practice developed in West Yorkshire and will focus on five key areas: Prevention, Detection, Protection, Management and Recovery.

The launch outlined the Stroke Prevention Programme and also sought insight from those with expertise in preventing strokes from occurring, managing strokes when they do occur and helping stroke survivors to recover. The 60 experts participated in table discussions to begin the implementation of the programme across the
A key focus of the programme will be communicating how we can all reduce the risk of stroke across the Bay . The social media statistics surrounding the launch showed that more than 122,000 Twitter accounts were reached by
tweets from the launch. (You can see my tweets about the event on our links page)

If you would like more information around stroke prevention please visit the website at

or get involved on Facebook @Baystrokeprevention and Twitter @bay_stroke

Glenys Marriott presenting 3rd sector role

Dalton in Furness 17th November

Note from the ICC and Cumbria CVS

We are hosting a day at the Drill Hall in Dalton-in-Furness, from 10-4pm on November 17th, to try and ensure our local community is as well as possible over Winter, which, whilst being beautiful and crisp up here in Cumbria, we also know causes difficulties for many people. We want everyone to LOVE Winter this year! We asked around and we have identified 6 domains that people struggle with over Winter and we would like to know if you would be able to contribute to any of these domains. We will be setting out the Drill hall in 6 sections each section devoted to one of the domains and if you would like to attend, know of someone who would benefit by knowing or wish to contribute literature or a display please let us know. Or indeed have any other ideas.

The Domains are as follows:

1)      Winter Wobbles: getting out, about and around in Winter, how to maintain activity levels in reduced daylight & poor weather, how to get around to where you need to during the winter months.

2)      Winter Blues: how to reduce isolation, keep connected, prevent loneliness and poor mood when the nights draw in

3)      Winter Bugs: how to stave off or manage the inevitable winter sniffles, best advice on preventing a minor ailment becoming a major illness

4)      Winter Weather: what support is out there to ensure the winter weather doesn’t wreak havoc, slips, falls, floods, frost, home safety, ensuring enough food is in the house if you can’t go out

5)      Winter Warmth: being cold makes many illnesses worse so how can you ensure you stay warm and toasty in and out of the house

6)      Winter Wellbeing: If you already have a long term condition, what advice or support do you need to prevent it worsening over Winter

We would love as much support as possible for this very community led event. We know there are so many resources out there, so many people doing great things, but do the right people know about it? We are hoping that both the work leading up to this event & the event itself will go a long way to connecting people, communities and resources.

In  addition the Furness Urgent Care Network which is a formal NHS body consisting of senior leaders in Acute & Urgent Care eg hospital managers, A&E consultants, Chief Nurses, Adult Social Care teams and Community Nursing teams will be holding their monthly meeting at the Drill hall in the morning so there is an opportunity for those people to see what support there is for the NHS from all the amazing work in the community & vice versa.

Please start talking about how we can shape this event, get back to us with ideas, contributions or criticisms so we can ensure that the event really showcases the community assets to give us the best Winter ever!

Looking forward to hearing from you

Dr Arabella Onslow

Integrated Care Communities in West North & East Cumbria, Stakeholder briefing – September 2017 (sent on behalf of Cumbria Partnership NHS FT)

Work to join up health and care services is progressing in west, north and east Cumbria through the development of eight ICCs. The following briefing for staff and stakeholders provides an overview of the progress that has been made to date, new ICC web pages and a summary of the communications and engagement approach that will be taken.

Please share this within your organisation through your usual channels. We will be issuing a press release next week which explains ICCs to members of the public and would appreciate your help sharing this on your websites and social media channels.

What is an ICC?

An Integrated Care Community works together to improve the overall health and wellbeing of local people by:

  1. Joining up health and care services
  2. Providing more care out of hospital
  3. Supporting people to manage their own health

Health and social care professionals, GPs, the voluntary sector and the community will work as one team to achieve this. By understanding the challenges that each area faces, and using the knowledge and experience of service users, the community can work together with health and care organisations to improve their health and wellbeing.

Why Integrated Care Communities?

The ICCs are being developed in response to the changing needs of the population which the current system is struggling to cope with. A growing elderly population with increasingly complex health needs mean people often spend longer in hospital than they need to or are admitted to hospital when it could have been completely avoided in the first place.

Health and social care professionals, GPs, the voluntary sector and the community are working as one team in each ICC to improve the health and wellbeing of local people.  They are focusing on helping people to manage long term health conditions, improve access to information about healthier lifestyles and providing more care out of hospital. They will focus on helping people to stay well and working with local communities, empowering them to take a more active role in their health and wellbeing.

ICC information now online

Information is now available online for each ICC on the North Cumbria Clinical Commissioning Group (CCG) website. It explains the areas covered, the health challenges that area faces and the progress that has been made as well as links to community groups, ICC contact details and the group of GP practices each ICC covers. The pages will be regularly updated with progress from each ICC.

Visit the new ICC webpages:

Progress to date

New ways of working are being developed in each ICC to achieve the above. These include community teams joining up with North West Ambulance Service (NWAS) to help keep people out of hospital and musculoskeletal practitioners working in GP practices to ensure people with problems such as back pain can be seen quickly, by the right person. Work is underway to identify frail and elderly patients and put steps in place to prevent falls before they happen and work is progressing with communities in Alston, Wigton and Maryport to develop alternative models of care to hospital beds.

Communications & Engagement

Engaging with local communities will play a key part in the success of ICCs. Services will be developed and improved through co-production which means drawing on the knowledge, ability and resources of service users, as well as providers. This recognises that communities and service users have valuable experiences and insight that can help shape future health and care services.

A communications and engagement plan has been developed to set out the overall approach for sharing information and working with local people and stakeholders. Each ICC will develop their own individual plan, working with the community to do so. All communications and engagement aim to be done using the following principles:

  • Open to all: working with communities right from the start, including hard to reach groups.
  • Flexible: working with individual communities at a time and place that suits them.
  • Responsive: listening to and acting on feedback.
  • Clear: being honest and open in our messages and using plain English.

Progress will be updated regularly on the new ICC webpages, through partner organisations, social media and the local media as well as events and meetings.

Some colleagues may have received an invitation to attend an ICC workshop; these are taking place at different locations over the coming weeks. The aim of the workshops is to continue the dialogue about integration and present an opportunity to start to build relationships and networks. We also want you to take the opportunity to shape and influence how the new services will work.

For colleagues who are based in and working closely with partners and communities in the south of the county; there is a similar approach being taken – information about the ICCs in the south can be found here.

Leaders are currently agreeing the process and format for sharing the vision and next steps. It has been agreed that there will be an event in October 2017 to bring together colleagues with a view to exploring opportunities for integration. More details about this and the emerging model will follow shortly.

Sign your organisation up to Compass in Cumbria today!


The Compass in Cumbria Project is a joint partnership linking together Third Sector and Public Health in a new way. Third Sector organisations provide specialist knowledge and support for a huge variety of conditions. Compass in Cumbria seeks to bring those organisations together, promoting partnership working and assisting in getting the people of Cumbria the best support they need to manage their conditions and live well.

There are so many Third Sector organisation doing such vital work in the county. By signing up to Compass in Cumbria, any non-profit organisation (i.e. Third Sector and statutory services) in the county can have access to the facets of the system absolutely free – The Client Record Information System (CRIS), the Multi-Agency Referral Service (MARS), the diary and networking function Placebook, and this very e-Hub to advertise their events, bulletins, factsheets and jobs.

To register, go to either the Resource Centre or the Organisations page, click the button “Register my Organisation”, and fill in the simple form. One of the regional District Administrators – West (Allerdale and Copeland), North (Carlisle and Eden) or South (South Lakeland, Barrow and Millom) – will get in touch to act as a point of contact and guide you through the application.

To complete the application, a member of the registering organisation able to make decisions on behalf of the organisation must sign and return the Data Sharing Protocol and Data Sharing Agreement that will be sent out to you, which will be then Countersigned by the District Administrator. These agreements ensure the relevance and quality of the material all partners agree to upload to the site.

The whole result of this process is the free access to the Compass in Cumbria e-Hub – a professional resource working to streamline services for the benefit of the people of Cumbria.

Working together works for everyone.

The link to sign up:

Allerdale Health and Wellbeing Forum

Health and Wellbeing Forum in Allerdale are pleased to announce grant funding for a Wellbeing Advisor role.

Completed forms to be returned to Valerie Ayre, Public Health Locality Manager (Allerdale) at by 9am on Monday 30 October 2017.

They are also looking for a third sector representative to sit on the Forum (role description attached). With the support of Allerdale Borough Council the Third Sector Representative is responsible for representing the collective views and priorities of local third sector organisations through regular meetings with the Allerdale Health and Wellbeing Forum and at key stakeholder meetings and networking events, where representation of, and consultation with the third sector is required. Closing date for expression of interest is 20 October 17