Newsletter and Interesting Information

This section to will contain the HNA newsletter which will be produced shortly, and any interesting information or documents we come across. If you have any documents you wish to be included, or you would like to receive our newsletter, please get in touch with us at contact@hampshireneural.org.uk

Stop, Look, Care Booklet

This booklet is designed to support carers and care workers (hereafter referred to as carers) who live and work in the Southampton, Hampshire, Isle of Wight and Portsmouth (SHIP) area. Carers should recognise changes in a person's condition by monitoring them and/or recognising any deterioration in their wellbeing. Please  click here for the booklet

On-line Survey

When someone is diagnosed with any kind of neurological condition appropriate treatment is often available to them but they may be unaware of the other support and specialist groups that deal with many different conditions such as Stroke, Parkinson’s as well as many less well known conditions where is it often even harder to find support. This is where Hampshire Neurological Alliance (HNA) fills the gaps by:

- Bringing together knowledge and information

- Sharing knowledge and information

- Signposting to relevant information and support groups.

HNA are developing our strategic plans for the next 2 years and would like your feedback as to how HNA can best support you. We would appreciate you answering the following questions so that we can gather as much information as possible;  click here.

Accountability Framework

The NHS has just released its Accountability framework. Click below to access the document.

NHS Accountability Framework

Social Care Information

Please Click Here for information about the forthcoming Green Paper on Social care, and Click Here for information about the delay associated with this document.

Patient Experience Survey 2018-2019 - To access the survey, please click here.

We are currently undertaking our third biennial patient experience survey.  Our patient experience survey is unique in gathering the views of people with neurological conditions across England about their experience of health and care services across the country. It enables us to understand what’s good, and what’s poor, in people’s experience of local services. As with our previous surveys, we will use the results to campaign for improvements to these services. We plan to publish a report of our findings and recommendations in summer 2019.

The survey is live online from 17 October 2018 to 22 March 2019. It may take around 20 minutes to complete. Survey responses are completely confidential, and information about this is provided at the start of the survey.

Our previous two patient experience surveys 2014 and 2016 were run online in 2014 and 2016. For 2018/19 we’re also adding a new clinic-based methodology, to enable us to achieve a more representative sample of people with neurological conditions, and increase our response rate. Clinical staff in hospitals across England will be hand out paper copies or the survey to their neurology outpatients. We are working with a survey company, Quality Health, to develop and undertake this additional survey method.

Another addition is that we are working with the Stroke Association on a stroke version of the survey. Stroke is more of a priority area for the health service than the rest of neurology. So, by working jointly with the stroke community we hope to gain more traction for the whole of neurology. To download a poster click here



Will you Join our Knowledge Network?

Are you a good communicator? Do you want to be involved in a project to ensure people with neurological conditions get the information they need? If they can help, click here

You can join the Knowledge Network as an individual or an organisation, so if you are happy to help please send us your email address and a little bit about you, and we will put you on the list to regularly receive emails from us, which you can then send out to the people you believe would benefit from the information. Act now - email us at contact@hampshireneural.org.uk

New Privacy and Data Protection Policies

Following the new GDPR regulations we have revamped our Privacy and Data Protection Policies. Please click the links to download the policies.


Read Jonathan Bryan's Story

To read Jonathan Bryan's story click here. More information is also available by following these links: - https://eyecantalk.net/ and


Carers Joint Strategy

Carers add a significant amount of value to our society. Our health and social care systems in Hampshire and in the UK rely heavily on unpaid carers. Without their carers, many people would not be able to live their lives as they do at present. The value of the contribution made by carers in the UK is now estimated to be £132 billion each year. To see the Carers Strategy document please - click here to download the PDF file.


Interesting Film - Powerful Messages

A film has been produced in conjunction with Healthwatch Hampshire, NAS (National Autistic Society), HAV (Hampshire Autism Voice), Autism Hampshire and health professionals.  The film shows the responses to a consultation that took place in October and November 2016, about the way in which mental health affects children and adults with autism, and accessing services in Hampshire in the last 3 years. Although concerning Autism and Mental Health, it includes some powerful messages, including from Carers. The film and report can be viewed at: www.shantsnas.org.uk/consult


Study Day Presentations

Please find below the presentations from our very successful study days:-

Study Day 19th July 2017

Study Day Programme

Fatigue Presentation

Why make changes and how they help

Study Day 11th November 2016

During this study we covered:-

Topics Parkinson's UK - a personal journey
Fiona Wheeler Stroke Survival - a personal experience
Karen Pritchard Serious Head Injury - a personal experience
Joy Cleightonhills Personal Planning and
Say it Once Anne Meader

This was followed by Round Table Discussions

Understanding Parkinsons

Personal Planning and Say it Once

Feedback from day


Study Day 2nd November 2016

Study Day Programme

Beyond Illness - Developing Competence

The PSP Association

Table Notes


Study Day 24th September 2015

This 2015 study day was title: Reablement is everybody's Business.There were 4 presentations covering Headway, Huntingtons, Motor Neurone Disease and Working Collaboratively – MS Society. There were four workshops Workshop 1: Health Perspective – Rehabilitation in the community Workshop
2: A New Social Care Perspective – Reablement and long term conditions Workshop
3: Maximising independence and quality at end of life Workshop
4: Voluntary Sector Perspective - Maximising independence and early intervention for people who are newly diagnosed.

Big Sheets Write Up

Workshop 4 Presentation

Workshop 4 - Topics for Discussion



Study Day 23rd April 2013

During this study day we looked at Motor Neurone Disease, Multiple Sclerosis and Acquired Brain Injury as well as Parkinson's

An Understanding of Parkinsons


Other Study Day Information

CHC Presentation

Reablement Presentation

Dysphagia Presentation



IOW Autumn Carers Newsletter


Useful Information

Take part in research looking at registrations, certifications and signposting individuals who have a visual impairment. For more information click here

The Neurological Alliance has just launched a new report, The Invisible Patients: Revealing the state of neurology services. Click here

Do you use 999 or 111 services? If you do, check out the ambulance service newsletter Click here

Download the Top 10 Tips and Practical Things that would make a difference document by clicking here The HNA working to make things better for you

Sounding Board - As part of HCCs project to improve involvement in the work of the department, Adult Services is working with Action Hampshire to establish a "citizen panel" of service users, carers, and community organisations. Participants will receive three surveys per year designed to gather input that will help guide departmental thinking before decisions are made. If you, or your organisation, would like to take part Click Here to apply

Do you want to help improve services? - Wessex Collaboration for Applied Health Research and Care is looking for people who are willing to work with them through patient and public involvement (PPI). If you are interested in helping them, click here for an application form.

First ever neurological dataset for England launched Years of concerted campaigning by the neurological community have been rewarded today with the publication of the first ever neurological dataset for England. More information Click here

MHDN Newsletter is now available. Please click here for your copy

New laws come in place on 2nd March about driving while taking prescription drugs. Click here and Click here for more information

Wessex Rehabilitation, Reablement and Recovery Quality Guidance Document now available - click here

A new adult exercise guide to physiotherapy has now been launched with useful tips and advice. You can download your copy here

For information on Muscular Dystrophy Campaign’s Bridging the Gap project email r.johnson@mucular-dystrophy.org or call 02078032865.

Duchenne Alert Card

Top 10 Tips and Practical Things that would make a difference - a report issued August 2014 following the HNA's networking day

Is localism Working for people with neurological conditions?

NA Manifesto 2015 - A call for action for neurology

Public Health England and NHS England - launch the first Neurology Intelligence Network

A new Neurological Alliance survey report

Navigating Neurology Services

Strategic Clinical Network briefing - for members and staff

Intelligent Outcomes - Neurological Alliance

Thinking Ahead The-Case-for-a-Strategic-Clinical-Network-for-Neurology

NAO December 2011

Local adult services for the next decade “ Royal College Physicians and Assoc Bristish Neurologists

LTNC research published march 2012

Thinking Ahead: the case for Strategic Clinical Networks for Neurology - Neurologcal Alliance June 2012

Richmond Group Patient Centred Care 2012

Excellent model of information across agencies- Cornwall & Scillies Oct 2011

Epilepsy Society - keen to train volunteers and raise awarness? See ..

The work of Regional Neurological Alliances

Breathe Easy IOW

More evidence of need + outcome measures July 2012

NHS Commissioning boards suggest need for strategic network - p8 of:-

Every year nearly twice as many people are diagnosed with neurological disorders as with cancer

Palliative Care

ABN Re Commissioning Neurology

Summary of NHS post April 2013 - Wessex

Integrated Care: Our Shared Commitment - a government framework that outlines ways to improve health and social care integration

Information about Lasting Power of Attorney from the Cabinet Office

Going the distance: National calls to action to drive neurological service improvement in England, which takes a critical look at how neurology is represented in the health and social care quality improvement system.

First National Neurological Database for England.

Study Day Presentations

HNA Study Day: - Reablement is everybody's business - in collaboration with Hampshire County Council. Main Presentation. Workshop 3 Workshop 4


Please find below the presentations from the study day on 24th April 2013

Aquired Brain Injury Document

Hexagon Pilot

Motor Neurone Disease

Research Initiatives

Can you help with Aphasia research which is being carried out by Holly Robson, a speech and language therapist and lecturer at the University of Reading. She is looking at trying to understand how the brain processes language after a stroke. The results of the research will be used to develop population-directed interventions and to apply for more research money to continue to understand language impairments after stroke. Holly needs to identify stroke survivors who speak in a sentence-like way but may have difficulties picking the right words for the context. Sometime people's speech can be muddled up. People with this kind of language problem usually have good mobility; they are able to walk well. If you think you know someone who might be suitable, Holly would be very grateful if you asked them if they were interested in hearing about the research. It is Holly's experience that stroke participants enjoy the research and find it empowering, even if it is not therapy research. If someone is interested in hearing about her research then she will visit them at home or at their stroke club to give them some more information. They can choose to do the research later. Holly is more than happy to speak to anyone (stroke club coordinator, clinician, patient, relative) about the research. Please don't hesitate to contact Holly: Tel: 0118 378 7467, Email: h.v.robson@reading.ac.uk, Address: Psychology and Clinical Language Sciences, Earley Gate, University of Reading, Reading, RG6 6AL.