Projects

Self Management Framework

Update from Jo Cole

Neuro Key were co-authors with Teesside University for some research into self-management in 2017, presented to a multi-disciplinary audience in October 2017 and the Tees-wide Neuro Forum.

Pleased to let you know that our paper, “Finding Meaning and Purpose”: A Self-Management Framework for Long Term Neurological Conditions’ has been accepted as an Empirical Oral Presentation at the Division of Health Psychology Annual Conference in Newcastle on 5th September 2018.

Full programme at the British Psychological Society website; www.bps.org.uk/dhp2018

Joanne Cole Head of Operations

Neuro Key

Tel;               01642 641825

Email;           jo.cole@na-tvdny.org.uk

Web;             www.na-tvdny.org.uk

Facebook;    NeuroKeyTVDNY

Twitter;         @NA-TVDNY

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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!

More than £1 million for 10 new research projects led by disabled people

Ten new projects across the UK have received between £40,000 and £150,000 of National Lottery funding each, to explore how disabled people can live as full citizens in our society and what changes and support will make that happen in practice.

Each research or pilot project will be led by disabled people or people with long term health conditions; they will be developing approaches and questions, working alongside academics and policy makers. Disabled people who often struggle to have their voices heard will be shaping research – such as people living with dementia, learning disabilities and mental health issues.

The English projects are:

Read the blog DRILL – The Next Steps by Kamran Mallick, Chief executive Disability Rights UK, which looks forward to a shift of focus, in 2018, when you will see some of the results of previous #DRILLUK research projects.

For further information on all the projects visit www.drilluk.org.uk

Thanks to the Big Lottery Fund and National Lottery for funding £1.1 million for these 10 new #DRILLUK projects.

Eleven new disability research projects receive £1 million as DRILL calls for new bid

Eleven projects across the UK are the latest to receive between £39,000 and £150,000 each of previously awarded funding to explore aspects of how disabled people can live as full citizens in our society.

The projects, which include exploring employment opportunities, housing and social care services for disabled people, are the latest to be funded by DRILL (Disability Research on Independent Living and Learning) programme, a £5 million research scheme led by disabled people and funded by Big Lottery Fund.

The announcement coincides with DRILL’s call for new bids for funding, which is announced this week – it is looking to allocate another £1 million.

All DRILL projects are led by disabled people or people with long term health conditions, working in co-production with academics and policy makers.

The latest grants were approved by the DRILL Central Research Committee, which is chaired by Professor Tom Shakespeare. He said:

“Once again, a terrific set of applications to the DRILL scheme. The Research Committee are delighted to be able to support work about  adapted housing, autism, young disabled people, disabled parents and other important issues, from all parts of the United Kingdom. It’s particularly rewarding to see the strong new relationships which are emerging between disabled people’s organisations and university researchers.”

Sadly none in Cumbria but do check out the successful projects:

Find out more

Co-producing technology: harnessing digital solutions for social care

Message from our Founder – Liz Ashall-Payne

Co-producing technology: harnessing digital solutions for social care: The report is based on a recent workshop, which explored how people who use services contribute to technological design and are changing the delivery of social care.

The Cumbria Neurological Alliance is in discussion with Liz Ashall-Payne to see how we can support the work of ORCHA

https://www.orcha.co.uk/

ORCHA is the Organisation for the Review of Care and Health Applications. Their main purpose is to carry out independent and impartial reviews of health and care related apps and to present this information clearly through thewebsite and professional platforms. They use a clinically and academically validated framework to thoroughly assess apps and present the results in an easy to search app database.

Live platforms make it easy to find relevant apps by category or keyword, and the relevant apps reviewed are summarised with two main scores – Value and Risk, as well as identifying key functions of the app.

This scoring and function system makes it easier for you to identify and compare the best apps for your needs, so you can achieve the best outcomes, with a better understanding of possible risks, to support your health and wellbeing needs or goals.

ORCHA powered clinical platforms can provide tailored functions to professionals to help find and recommend apps to their patients to enhance treatment plans.

By working with healthcare, the government, and developers, it is ORCHA’s mission to help deliver improved visibility of better and safer apps.

Watch this space!

Barrow GP and residents – leading activities to improve health and happiness

The following update has been received from BetterCareTogether:

Barrow locals have begun training to lead activities to improve the health and happiness of local communities as part of a scheme to reduce social isolation in Barrow in Furness.

 ‘Furness Wellness Days’ which are based at Walney Cottage, Barrow-in-Furness were introduced to bring the community together to promote health and wellbeing through a range of different activities.

 The initiative was launched following conversations with members of the public who all explained that happiness improves their ability to manage their own illness within the community. Happiness is also directly affected by social isolation, for example Age UK have suggested that feeling alone and vulnerable can lead to depression and a serious decline in physical health and wellbeing. This is an increasing concern as Age UK have reported that two fifths of older people say the television is their main source of company.

 

 

Ivan Drozdov Communications and Engagement Coordinator
bettercaretogether (Morecambe Bay Clinical Strategy)
 Moor Lane Mills, Moor Lane, LANCASTER, LA1 1QD 01524 518638

Note:  Dr Farhan Amin GP instigated these workshops with the support of therapists from the World Health Innovation Strategy based in Carlisle.  Contact Gareth Presch at info@worldhealthinnovationsummit.com

for further information

http://www.worldhealthinnovationsummit.com/blog/2016/04/24/together-we-inspire-whis-gareth-presch/

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

https://www.surveymonkey.co.uk/r/6R832YV

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

Image result for wheelchair images

 

 

 

Brain Research Trust – call for grant applications

The Brain Research Trust has launched its first national call for project grant applications. The charity is looking to fund projects in these areas:

  • Acquired brain damage: research into interventions that promote recovery at the impairment level, particularly those that bring together enhanced plasticity or stimulation with rehabilitation
  • Neuro-oncology: research addressing the biology, treatment and diagnosis of primary brain tumours and associated neurological complications
  • Headache and facial pain: research addressing the fundamental causes, mechanisms and relief of headache and facial pain

The application deadline is soon – 29 March. Visit brt.org.uk/research-grants for details.

Rehabilitation – let us know if you have problems accessing services

Why is rehabilitation important?

The aim of rehabilitation is to help you regain your former skills where possible, and compensate for skills lost, to the best of your ability. When you are living with a neurological condition, undergoing rehabilitation can be a key factor in determining your quality of life. It is therefore important that you have access to appropriate equipment and to appropriate health and social care professionals, as necessary. Such professionals may include speech and language therapists, occupational therapists, physiotherapists, neuropsychologists, clinical psychologists, rehabilitation physicians, orthotists and care managers.

You may benefit from rehabilitation in hospital or at home and at any stage of your condition. However where an acute or emergency episode has occurred, as for example with head injury, the greatest progress is often achieved over the following two years. In such cases a speedy referral to rehabilitation services is important. Rehabilitation usually ceases when it no longer produces sufficiently marked changes. However,sometimes rehabilitation is needed to prevent things getting worse. Although it may not achieve measurable improvement, it is still worth while.

You should be reassessed regularly or as necessary, especially if your condition is changing. You may have to ask and keep asking either your GP or specialist for this to happen. This reassessment can be carried out by a rehabilitation physician, by your hospital or community rehabilitation team. The way this service is organised, and the procedures for referrals and assessments, varies throughout the country.

In Cumbria we have been involved in two reviews of neurological rehabilitation services.  The first has been county wide, including the CCG and the Cumbria Partnership Trust.  The second is a review of specialist rehabilitation across Lancashire and South Cumbria.

Please let us know if you have experienced problems accessing rehabilitation.