Specialised commissioning neurosciences transformation project

Specialised commissioning neurosciences transformation project
The Neurological Alliance has been invited to sit on the expert advisory group which will provide overall steer to NHS England’s specialised commissioning neurosciences transformation project. Members attended the first expert advisory group meeting, at which an overview of the project and progress to date on each of the six workstreams was given: the neurosurgery workstreams – brain tumours (elective pathway), pituitary (low volume pathway), subarachnoid haemorrhage (emergency pathway), and the neurology workstreams – MS, epilepsy, neuro-immunological conditions.

Work will be undertaken to determine whether these can be scaled up, with the aim of defining an optimum neuro-wide model. Additional work from any other additional pathways in other condition areas will be taken into consideration. The neuro-wide model will be tested across a local footprint to refine it. Following this, tools will be developed to enable the model to be implemented via regional specialised commissioning teams (years 3-5 of the programme of work).  Other outputs will include guidance on pathways, revising the new service specifications as needed, and the provision of best practice examples. Any changes to the provision of specialised neurology services will also be made during the implementation phase.

NHS Neurosciences Clinical Reference Group reconfiguration

The National Neuro Alliance has been notified of proposed changes to NHS England’s specialised commissioning clinical reference groups. These include reducing the number of clinical representatives – removing regional representation – and reducing the number of patient public voice reps (from 3 to 2, except in exceptional circumstances).

There is also a proposition to merge the specialised pain CRG into the neuroscience CRG.

The NA responded to the consultation, raising concerns about the the potential dilution in patient voice, the reduction in clinical input across both pain and neurosciences, and the increased workload that would result from the merger.

CCG/STP mini audit

The National Neurological Alliance received an FOI response from NHS England highlighting that just 37 of 195 CCGs have submitted NHS RightCare delivery plans that include a focus on neurological problems for their improvement projects.

They are now actively considering how to influence STPs to focus more on neurology, including potential funding and resources for future influencing work.

£450K to help patients have their say on health services


13 September 2018

A windfall of £450,000 to support practical and innovative ways to help patients improve health services has been announced.

Read more

The Building Health Partnerships programme has been awarded the money from NHS England and the National Lottery – through the Big Lottery Fund.

The funding will provide tailored support for co-production to 10 areas, helping to more easily involve patients and carers in designing the services they use.

The funding will also support leadership training and develop a ‘champions’ network’ where community representatives and commissioners can share the best ways to ensure communities and patients are at the heart of Sustainability and Transformation Partnerships’ (STP) and Integrated Care Systems’ (ICS) plans.

The 10 areas receiving the support will take part across two cohorts, and the first five STP/ICS areas will be:

  • Frimley Health and Care
  • Healthier Lancashire and South Cumbria
  • North Cumbria
  • Nottingham and Nottinghamshire
  • West Yorkshire and Harrogate Health and Care Partnership

These STPs will bring local groups and key decision makers together to put patients at the heart of decision-making, being supported by a series of externally facilitated sessions

North Cumbria System Leadership Board: Feedback Summary

We asked to be included in these stakeholder workshops and this is the update from Karl McLeish NHS North Cumbria Clinical Commissioning Group  Tel: 01768 245 486

Stakeholder Workshop

What is important for this process?:

  • Engagement must be two-way. This must not be an exercise is simply gathering information, and feeding it up the chain in a one way manner;
  • Links, Networking and help in forging links and networks. Know who the ‘unusual suspects are’ – Include the ‘unusual suspects’;
  • Face to face meetings, but for a reason (i.e. not just a meeting without a clear need or purpose);
  • Use of existing frameworks, but not duplicating work or initiatives that are already exist: needs to be complimentary to the ongoing works of other organisations;
  • productive – Build round existing networks – feeding into existing channels and mechanisms;
  • Innovative: early Involvement and input on key issues;
  • Openness;
  • Timeliness: the process must be relevant to the context of the issues;
  • Inclusive: involve all stakeholders.
  • Relationships at a strategic level: it may be important to have relevant, key system leaders ’in the room’.

What isn’t so important/What would the ‘forum‘ like to avoid?:

  • To be talked at and/or having one person representing and/or speaking for all;
  • Hierarchical system – requires a mixed approach to make effective group/network – both formal and informal;
  • Forgetting to ‘go out’ to where people are who may have vital input, or may be able to offer solutions;
  • People/providers/organisations being missed out, who ought to be included;
  • Lack of understanding of the ‘blocks’ or challenges that the third sector face in the middle of organisations (business swift);
  • A focus on paying for/commissioning a service, without understanding the impacts on people/service users and patients;
  • To be advised of policies after decisions have been made;
  • To be pressured or panicked by too many meetings;
  • Underestimating the importance of the NHS being ‘seen to listen’, and wanting to be different.

Ideas around ‘Virtual’ Input:

  • Forums for feedback on specialist issues;
  • A chance to share intelligence and navigate through challenges;
  • Virtual forum – something like ‘mumsnet’?;
  • ‘art of hosting’ – to harvest community feedback;
  • SurveyMonkey – Perhaps limited in its power and too rigid, but also useful to monitor the impact of change ate key time points.
  • ‘Gateway’ type facilitation of information/input/engagement, so that the right ‘people’ are included in the right areas and, equally, so that they can raise issues In the appropriate way;
  • ‘Survey type’ monitoring of the frontline impacts that come from the implementation of strategic decisions made at the SLB;

Ideas/mechanisms for ‘two way’ engagement:

  • Themed events, triggered by items on the SLB Agenda;
  • Relationships at a strategic level: it may be important to have relevant, key system leaders ‘in the room’;
  • Presenting ideas/feedback directly to the SLB;
  • Bespoke Engagement – meetings triggered for a reason, involving the right people and the right resources;
  • Brainstorming/’think tank’ type sessions around key areas of concern;
  • Interaction;
  • Early Involvement;

What the forum would like to do and achieve:

  • Improve impact, align activity and enhance problem solving resources;
  • Balancing system priorities with community’s priorities;
  • Feed into the systems that influence change;
  • An opportunity to fill in the missing jigsaw pieces highlighted at other boards and groups. Bringing together the missing bits that complete that bigger picture;
  • Have a community based wellbeing platform, with the right conversations happening in the right places;
  • Establish virtual connectivity in both directions: i.e. Stakeholders >< Virtual connections and Bespoke Engagement system >< SLB (participation, Involvement and Engagement of Stakeholders P.I.E.S.)
  • To use existing networks, knowledge and relationships and to utilise expertise and experience;
  • To influence knowledge and relationships;
  • Planning – to have a planned timeline;
  • To use assessment of the impact on the patient/service/service provider as a measure of success (two way engagement? Perhaps with survey monkey);
  • To create an opportunity/platform for bringing back good examples;
  • To create a forum which can update on filing the gaps (and highlighting where those gaps are to SLB, and suggest solutions).

Questions, suggestions and potential challenges:

  • How often does SLB meet? What would the requirement for the stakeholder forum meeting frequency be?;
  • How is this going to be different from ‘forums’ that already exist?;
  • How will this forum impact the SLB? Will it respond in proactive ways, reactive ways, or will it be a mixed approach?
  • How will it ensure parity? Is only the ‘strongest voice’ listened to?;
  • Existing providers are not sure who to approach to make the health population aware of the services that currently exist and are on offer – will this forum provide some useful clarity?;
  • Trust – there appears to be some question as to credibility/what a healthcare professional ‘looks like’;
  • No real way to tell whether stakeholders are being listened to;
  • Only includes the ‘usual suspects’ (currently);
  • Although this process should evaluate and contribute to the decisions that are made at SLB (the decisions that are already on SLB Agenda), it might also include a mechanism for creating awareness around the ‘hot topics’ as experienced by front-line providers/stakeholder organisations;
  • Timescales of meetings around decisions: feeding into the board before decisions are made – how would that work around all the timings and agendas of the SLB meetings – is the process reactive, proactive, or do we need a mixture of both?
  • Why can’t the Third Sector simply be represented on the SLB? (this is being actively explored as an option)

Next Steps:

  • To remain Flexible, I.e. to constantly review our approach to make sure it is working;
  • To consider using pre-existing forums and networks, I.e. Action For Health;
  • To trial a ‘virtual group’ for feedback – this could be an email/survey monkey based tool;
  • To hold bespoke meetings on an issue which will involve members of SLB;
  • To develop a mechanism to collect ‘intelligence’ and/or feedback about challenges/ successes around implementation.



Supporting more unpaid carers in north Cumbria

11th June

Press release from North Cumbria Health

Health professionals have been working closely with organisations that support unpaid carers in Cumbria to find ways to reach more people and provide the support needed for them to continue in their vital role.

Unpaid carers, anyone who looks after a family member, partner or friend who cannot cope without their support, play a vital role in the health and care system but often don’t access the support that’s available. Eden Carers, Carlisle Carers and West Cumbria Carers have been looking at how they work with health professionals, who come into contact with carers on a daily basis, to raise awareness of their work.

Stephen Eames, Chief Executive at Cumbria Partnership NHS Foundation Trust and North Cumbria University Hospitals NHS Trust, commented:

“This work is an excellent example of health, care and third sector organisations working closer together to benefit people in Cumbria. It is exactly the type of closer working we’re trying to achieve through the development of Integrated Care Communities (ICCs). Unpaid carers play an essential role in our communities and by working together we can ensure they can access the support that’s available to them to help them to stay well.

“It is the ambition of our ICCs to increase the number of projects like these where we work as one system to provide seamless care for all those who come into contact with our services. We will continue to implement the lessons learned to benefit more people and create happier and healthier communities.”

These are just three examples of where health, care and carers’ organisations have successfully worked closer together to support more unpaid carers in north Cumbria.

West Cumbria Carers

Members of staff from West Cumbria Carers work closely with the discharge team at the West Cumberland Hospital (WCH) ran by North Cumbria University Hospitals NHS Trust (NCUH). They spend time on wards each week and talk to carers at visiting time to introduce the service and organise carers’ assessments and support for when the person being looked after leaves hospital.

Between April 2016 and 2017 210 carers were identified and 87 of these were referred to West Cumbria Carers for further support. As a result of the relationships that were built a similar approach is now underway in the Cumberland Infirmary, Carlisle, to support patients from west Cumbria.

Ann Quinn, Carers’ Health Support Worker at West Cumbria Carers, said: “Since engaging with the Discharge Team and other services at WCH we have developed a pioneering approach of identifying carers. The openness to joint working means that we have so many more opportunities to meet with health professionals and to support them to identify carers and proactively refer them into our services.”

Eden Carers

Eden Carers has a strong relationship with the Eden Memory and Later Life Service, ran by Cumbria Partnership NHS Foundation Trust (CPFT). A member of staff acts as a ‘carers’ champion’ and the whole team identify carers and signpost them to Eden Carers. In 2017 the Memory Services referred 62 carers to Eden Carers who then had their needs assessed and were given support tailored to them.

Jennifer Bell, Trainee Assistant Practitioner and Eden Carers champion at CPFT, said: “I’m passionate about the work I do as a carers’ champion. Every day, unpaid carers provide invaluable support to our health and care system and are a huge part of our future. I help to make sure that they have access to support that’s available and I’d encourage all other health and care workers to consider becoming champions too. Making referrals to carers’ organisations couldn’t be easier so it’s vital that all health professionals make the most of this fantastic resource.”

Carlisle Carers

Staff on Hadrian Unit at Carleton Clinic in Carlisle, ran by CPFT, started an initiative in 2012 to better involve family and carers. They began to invite family members/carers along to find out more and ask questions. During this visit the carer’s needs are assessed and referrals made to carers’ organisations if appropriate.

The success of this led to an aspiration to have a carers’ champion in every inpatient mental health ward and crisis teams. At least one member of staff from each team was given training, with support from Carlisle Carers, on the role of carers, how best to involve them in care and what support is available. They then share this training, which includes case studies from local carers, with the rest of the team.

Kay McGregor, Operations Manager at Carlisle Carers, commented: “This has been an excellent opportunity to work with CPFT, ensuring carers are identified and referred whenever there is a need. Training initiatives have been set up for staff, focusing on the importance of their patients’ carers and raising awareness of what support is available, specifically around mental health.”

Carers make up more than 10% of the population but relatively few receive support from carers’ organisations, despite the practical and emotional pressures they may face. They are often unaware of support available; don’t recognise themselves as a carer or don’t know where to turn for help.

This work was part of the Reaching Out to Carers project, supported by funding from the Big Lottery Fund, and successes from this will continue to be implemented across the health and care system. 80% of carers involved said a change in health was the trigger for them to access support and more than half said that intervention from a health or care professional was key in their seeking support from a carers’ organisation.


Notes to editor

This press release was developed by the North Cumbria Integrated Care System.

A summary of the Reaching Out to Carers project is available here:

More information on carers’ organisations in north Cumbria is available on the following sites:

Carlisle Carers –

West Cumbria Carers –

Eden Carers –

More information about the North Cumbria Integrated Care System is available here:

National Carers week takes place between 11 and 17 June 2018 –


Notes to editors

The North Cumbria Health and Care System is made up of health and care commissioners and providers – Cumbria Partnership NHS Foundation Trust, NHS England, NHS North Cumbria Clinical Commissioning Group, North Cumbria University Hospitals NHS Trust, NHS Improvement, North West Ambulance Service, primary care – working in partnership with Cumbria County Council and third sector organisations.


This integrated approach to health and care will see much closer working between organisations – it is not a merger or the creation of a new organisation.

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.