New role for Alliance

NSCN – Mental Health, Dementia and Neurological Conditions

The Northern Strategic Clinical Networks and Senate set up the Mental Health, Dementia and Neurological Conditions Involving People Forum as part of the Public and Patient Involvement strategy.  We are pleased to be a part of this, together with the Northern NA and Tees Valley Durham and North Yorkshire Alliance (TVDNY)

The aims of the forum

  1. To ensure that public, patient and carer voice is at the heart of the Northern Strategic Clinical Networks (NSCN) and Senate decision making  for Mental Health, Dementia and Neurological Conditions.
  2. To develop and strengthen the relationships between NSCN the Mental Health, Dementia and Neurological Conditions Third Sector and Voluntary organisations across Northern England.
  3. To work in collaboration with people on their Mental Health, Dementia and Neurological Conditions and wellbeing.

Michelle Wren is the Network Team Facilitator at

We look forward to helping this approach develop.

Eden District Council makes us a charity partner

We were delighted to be informed that Eden District Council’s Chairman John Thompson has decided to make the Cumbria Neurological Alliance and the Eden Valley Hospice partners in its charity fundraising events this year.

This is his press release:

Glenys Marriott Alliance chairman with Santander Manager,  Cllr Thompson and member from Eden Valley Hospice

Glenys Marriott Alliance chairman with Santander Manager, Cllr Thompson and member from Eden Valley Hospice

Chairman starts fundraising for chosen charities

Eden District Council’s Chairman John Thompson has commenced his fundraising work for his chosen charities in 2014/15, Eden Valley Hospice and the Neurological Alliance.

The Chairman’s fundraising efforts this year are being supported by the Penrith branch of Santander.

Council Chairman, John Thompson said: “I am raising money this year for two fantastic charities. The first, Eden Valley Hospice is very well established in the local area and provides support and care for people and their families who have a life limiting illness. The second is the Neurological Alliance, who collectively with over 80 national and regional brain and spine organisations, helps to make life better for the 10 million people in the UK who have a neurological condition.

“I am absolutely thrilled that Penny Cowperthwaite and her team from Penrith Santander are supporting my fundraising efforts and yesterday (1 July) they held a Cake Day and raised £411.91. Santander has kindly match all the money raised from the cake sale for Eden Valley Hospice so the total is now £823.82! I would like to thank all of Santander’s staff and customers for their generosity. I look forward to organising more fundraising activities throughout this year for both charities.”

Local charities in Eden District can benefit from the Santander Foundation’s Community Plus Fund.  Simply complete a short form in their local branch nominating your favourite registered charity for grants up to £5,000 from the £1.23 million Santander Community Plus Fund.   Many charities in the local area have already benefited.

For more information about Eden District Council visit

Report reveals the true impact of neurological conditions

In April the National Neurological Alliance published a new report and accompanying factsheet revealing the economic and societal impact of neurological conditions and setting out the steps needed to address the major gaps in neurological data and intelligence.

Measuring up: improving the quality of neurological data and intelligence and Neuro Numbers, our new prevalence and statistics resource, unveil new figures showing that:

  • The number of neurological cases in England has now reached approximately 12.5 million – this equates to 59,000 cases per clinical commissioning group
  • 1.3 million hospital admissions were recorded for people with a neurological diagnosis in 2012/13 – representing an increase of more than 500,000 over a five year period
  • The NHS spent over £4.4 billion on neurological conditions in 2012/13 alone
  • NHS expenditure on neurological conditions increased by over 200%between 2003/4 and 2012/13

Despite their huge impact, historically very little information has been collated and published about neurological conditions and how people affected by them are cared for and supported by the NHS and social care services. There has also been a poor understanding of their prevalence and economic and societal impact among decision-makers at the national and local level.

Momentum behind better data collection and analysis has begun to grow however. Following the 2012 Public Accounts Committee (PAC) report on neurological conditions, which drew national attention to the dearth of neurological data and intelligence, and work that we have undertaken since with Dr David Bateman, the National Clinical Director for Neurological Conditions,NHS England and the Health and Social Care Information Centre (HSCIC), the first neurological dataset was launched in March of this year. This brought together for the first time accessible neurology data from various sources within health and social care.

Whilst the publication of the dataset is a seminal step forward, it is only the beginning, with Measuring up forming a vital part of our campaign to push for the creation of a comprehensive system of neurological data and intelligence capture and analysis. With this in mind, our report :

  • addresses and reaffirms the rationale for improving the collection and quality of neurological data and intelligence;
  • presents a roadmap for improving the wider collection and analysis of neurological data and intelligence, setting out clear short, medium and long-term goals.

The NHS has done great things with data and intelligence for patient communities such as cancer and cardiovascular disease; with the right systems in place it has the opportunity to do similarly great things for people with neurological conditions. It is crucial that having taken on the challenge of improving neurological data capture and analysis, Government, NHS England and Public Health England commit to seeing it through.

Here in Cumbria we look forward to continuing to work closely with our health and social care colleagues over the coming months to achieve data parity for neurological conditions and know that with the support, expertise, drive and enthusiasm of our community, the aspirations of this paper can be realised in full.

Exciting invitation from Cumbria CCG

Cumbria Clinical Commissioning Group (CCG) is developing a strategy for the use of technology across Cumbria and has arranged for the Alliance to become a member of the group which will be considering this approach. The group is the Cumbria Rural Health Forum chaired by Professor Alison Marshall.  We are looking forward to contributing to this important strategy which will be of great interest to people with a neurological condition.

Cumbria Rural Health Forum

Rural communities face particular issues in accessing healthcare. These issues include:

  •  Dispersed communities meaning that people have to travel further to access healthcare;
  • Smaller GP practices and other health centres, so that staff may feel professionally isolated;
  • A greater reliance on volunteer services;
  • Population demographics that include relative more older people than in urban centres;
  • Poor quality broadband and mobile infrastructure.

The Cumbria Rural Health Forum was formed in September 2013, to represent organisations interested in and responsible for delivery of health and social care in Cumbria, to provide leadership in developing common themes around rurality and work strategically to improve the quality of services in Cumbria.


To have a comprehensive and strategic approach to managing health and social care within the rural county of Cumbria.


To bring together all relevant organisations and groups within Cumbria to share experience, develop a common understanding and strategy. To use this forum to avoid duplication and gaps in services, identify opportunities for joint implementation through projects and shared activities. To provide a communications, knowledge sharing  and educational support infrastructure  for isolated professionals and voluntary groups.

Priorities for 2014

The priorities are to establish a virtual infrastructure for the forum, formalise and plan a series of networking workshops, meetings and project sub groups. The first theme that the group has chosen to develop is digital technologies to support remote consultations, telehealth and telecare. In 2014, the group will develop the Cumbria Strategy for Digital Technologies in Health and Social Care. We will identify at least three joint implementation projects to take forward with funding from the partners and external grant sources.

We will be delighted to join these Forum partners

  • University of Cumbria,
  • Cumbria Partnership Foundation NHS Trust,
  • North Cumbria Universities Hospital NHS Trust,
  • North West Ambulance Service, Care Innovations,
  • Cumbria Social Services,
  • Copeland Borough Council,
  • Cumbria Clinical Commissioning Group,
  • Merck,
  • Great North Ambulance Service,
  • GP practices around Cumbria,
  • Cumbria Public Health,
  • North East-North Cumbria Academic Health Science Network,
  • Tunstall Healthcare,
  • Cumbria CVS,
  • Cumbria Rural Housing Trust,
  • Cumbria Healthwatch
  • Eden Carers
  • Oldpers
  • Eden Community Alarms.



Forum website