Month: August 2014

Neuro forum in North Cumbria for NHS SCN

Claire Braid is the Network Delivery Lead for Northern England Strategic Clinical Networks, part of NHS England.  Claire has been a great support in setting up our Alliance and has been to a number of meetings.

Things have started to progress with the neuro-rehab and self-management workstream, as one of the main priorities for the Neurological Conditions Network.  This is a very large piece of work, so it has been agreed with our Network Clinical Leads, Dr Nicky Chater and Kim Westwood (Neuro Conditions Lead and AHP Rehab Lead respectively), to focus on the self-management aspect of this.

It was agreed a good starting point was to develop some standards for self-management that are regionally agreed, and are relevant to a wide range of people with neurological conditions.  For the purpose of this piece of work, ‘self-management’ will be a broad term looking at all aspects of a person’s life, and not just structured ‘self-management’ programmes, although this is likely to form a part of it.  For example, the standards should encompass things like access to more mainstream community resources such as leisure services, and maintaining / returning to work.

We are aware there are many standards already out there for other conditions, both nationally and locally, as well as documents like NICE guidance, so these would form the basis of the regional neuro standards.

The Tees Neuro Forum  volunteered to start to draft up standards for neuro.  We offered to set up a Forum for North Cumbria under the umbrella of the Cumbria Neurological Alliance. One of our committee members Dr Vincent Foxworthy has agreed to set this up.  This will promote a truly region-wide approach to this piece of work, provide an opportunity to benchmark services and have a regional consensus on what good self-management should look like.


We were really impressed to have a talk by Xeed about their work in Cumbria.

CONFIRMED! They have acquired a slot at the Sandgate Hydrotherapy Pool in Kendal exclusively for XEED members.

Hydrotherapy is the use of exercise in a specially heated pool and is known to improve the quality of life.  They have a fantastic physiotherapist to lead the hydro session. She will teach movements that are appropriate for you and your condition. This is such a great opportunity so don’t miss out.

The session is biweekly and begins on Wednesday 7th May 2014. 7.30pm – 8.30pm and
will cost just £6.

Please register your interest by emailing or calling Amanda on 07909763038. Please note that there are a limited number of spaces. After registering your interest they will contact you directly, so please ensure they have your telephone number, email address and your postal address.

They have also started a new singing club.  Please keep tuned in for further information and register your interest at


Exploration of rural transport for health appointments

The Cumbria Rural Forum is investigating problems experienced by patients when trying to access health appointments.  The Alliance has heard of many problems, including the new thresholds for obtaining ambulance transport, problems when early appointments are booked meaning no transport is available and the cost of regular journeys out of county to obtain treatment.

We would like to know if you have a problem accessing your health appointments.  Please complete the form below to tell us what the problems are.


Improving Wheelchair services

One of our priorities in Cumbria is to improve the Wheelchair service for all those who need it with a neurological condition.  At the end of March 2014 NHS England announced the following statement:

Wheelchairs enable many people to live fuller lives, yet the wheelchairs services provided by the NHS often fall short of meeting the needs of wheelchair users.  In an attempt to redress that, NHS England is working with others to improve the way in which they can support all wheelchair users.

Sir David Nicholson made it his pledge for NHS Change Day 2014 to bring wheelchair users together with NHS clinicians and managers, and with third sector organisations, to improve services across England.  The Wheelchair Summit, held on 25th February brought these groups together to look at the problems with current wheelchair services and to identify what should happen locally and nationally to improve services.  Those who attended the summit together  highlighted areas of improvements and made recommendations where action is needed.

Contained in the documents below is:

The Cumbria Neurological Alliance is gathering together peoples’ stories of the problems they have with the current wheelchair service.  We really want to hear from you and if you can share your issues we shall include them in our work.  Do fill in the form below.

Epilepsy service project in North Cumbria

The Alliance was delighted to be invited to join a steering group to deliver an Epilepsy service project in North Cumbria.
The first meeting was held in April we have been working hard to develop a new service proposal and business plan.
Members include
Dr Jikta Vanderpol – Neurologist and lead consultant for this project
Sam Robinson – Epilepsy Nurse Specialist
Barbara Crosland – Trust business manager
Lisa Gibbons – Eden Senior Commissioner – Cumbria CCG
Angela Pullen – Service Development Lead – Epilepsy Action
Glenys Marriott – Cumbria Neurological Alliance
John Spark – Epilepsy Society
Matt Eddlestone Healthcare Partnership Manager, UCB Pharma
If you would like to tell us about your epilepsy services please complete the form below and we will feed your comments into the steering group.

Age UK South Lakeland – the Gateway Centre

I had the pleasure of meeting up with Dave Thomson, the manager at Age UK South Lakeland in Kendal to discuss the Alliance becoming a partner in their excellent initiative at the Gateway Centre in Kendal.

x80Age UK South Lakeland Logo RGB

Located together with the new Captain French Surgery in Gillinggate, Kendal different charities are working together at the centre to provide information and advice, practical support, and social opportunities.

It’s open Monday to Friday, 10am–4pm (reception 01539 792019), and you can be assured of a warm welcome. At a time when public money is so tight, this is a first-class development.

The project has been funded by Cumbria Partnership NHS Foundation Trust, as one of a number of similar projects across Cumbria. These include Eden Community Hub, Keswick Health and Wellbeing Hub and Carlisle Centre for the Third Age. The aim of the projects is to ensure that people get the best possible support and are signposted to local services and social activities.

You can


First regional Neuroscience Conference in Cumbria

The Cumbria Partnership NHS Foundation Trust hosted the first regional Neuroscience Conference in Cumbria on Friday 28th and Saturday 29th March in the Lake District. Led by Dr Jitka Vanderpol, consultant neurologist, one of our members, we were pleased to be represented at the event and a number of our members took presentation stands to highlight their work in the county.

During the first day of the conference, Friday 28th March, there was a formal dinner followed by ‘Reflections of a Northumbrian Neurologist’ by Lord Walton of Detchant; Vice President of Parkinson’s UK, Professor David Hunter on ‘Meeting the Challenge of Long Term Conditions’ in the new NHS and an open discussion forum on current NHS reform, commissioning arrangements and the impact on services.

The focus of the second day, Saturday 29th March, was the diagnosis, management and treatment of MS, Epilepsy, Headache and Parkinson’s Disease and featured both national and local speakers.

This was a good conference and one which we hope will be repeated.

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.

The True Colours Trust

The True Colours Trust run an individual grants programme for young adults aged between 18 and 26 years who have
a disability or/and a complex health need.
Grants may be used to fund household items, Play and exercise equipment, music equipment, computer and games equipment, leisure activities, hospital visits, sensory items, jet baths, holidays, removal costs and funeral expenses.
Other items may also be considered if recommended by a qualified professional. To apply: download
an application form from the website.
All applications must be referred by a medical professional or social worker.
Financial information on household income will be required.

Cumbria Rural Health Forum

We are pleased to be a member of the Forum and are currently collecting details from our members about technology they use which enables them to lead a more rewarding life.  Please let me know if you use Skype for clinical consultations for example, or have APPs which help you manage your disability.

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

Dispersed communities meaning that people have limited access to services and have to travel further to access basic healthcare;

  • Smaller GP practices and other health centres, meaning that staff may feel professionally isolated and removed from opportunities for professional development;
  • A greater reliance on volunteer services;
  • Population demographics that include relatively more older people than in urban centres;
  • Poor quality broadband and mobile infrastructure.

The Cumbria Rural Health Forum was formed in September 2013 with a mission to maximise the health of rural communities through the discovery, creation, development and sharing of evidence-based strategies, best-practice, tools and techniques that support the effective and efficient delivery of public health, health and social care in rural areas. The forum seeks to achieve this by forming a network of organisations interested in and responsible for delivery of health and social care in rural areas.  The forum is looking to provide leadership and to work strategically in developing common themes around rurality to improve the quality and availability of healthcare services in Cumbria.

The vision of the Rural Health Forum is that this learning is made visible, shared and used within the healthcare infrastructure of Cumbria and is also made available to the wider world of healthcare. We will use this forum to avoid duplication and gaps in services, identify opportunities for joint implementation through projects and shared activities and to provide 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.

 Forum website

 Membership of the Rural Health Forum:

Membership is currently open to any organisation or representative body that that is interested in the mission and can add value to releasing it; either based in Cumbria, providing health and/or social care services to Cumbria, or planning to do so.  During 2014 a formal membership structure will be developed.