WNA Annual Review 2016

Contents
Foreword by WNA Chair / 3
Influencing / 4
Posture & Mobility Service
Neurological Conditions Delivery Plan
Awareness Raising & PREMs
Augmentative and Alternative Communication (AAC) Project Board
Supporting the Research Agenda
Governance / 8
9
11
11
12
14
Treasurer’s Report / 15
Executive Committee Members 2016 / 17
WNA Membership / 18

Foreword by WNA Chair

Welcome to the Wales Neurological Alliance’s Annual Review for 2016.

Needless to say 2016 has been another busy and fruitful year. In particular we have seen increased activity in relation to our influencing agenda. This has been primarily through our continued participation as “critical friends”within the Neurological Conditions Implementation Group.

Through our continued role as secretariat to the Cross Party Group for Neurological Conditions we have seen a growing and challenging work programme where we have been able to address many of the key issues that are of concern to people affected by neurological conditions.

Similarly, our representation as stakeholders with external partners has seen WNA providing challenge and information to important policy and decision making bodies such as The Posture & Mobility Service and the Augmentative and Alternative Communication (AAC) Project Board.

An exciting piece of influencing work that WNA has continued to be involved in has been the development of PREMs for use by NHS Wales in relation to Neurological Conditions including Stroke. WNA is particularly pleased to have continued its negotiations with the Neurological Conditions Implementation Group and Welsh Government to secure the funding that will enable WNA to deliver its programme of awareness raising in the coming years.

I am very pleased to report that our membership has increased during the year which gives us added strength and a greater mandate looking forward.

WNA Executive Committee has worked tirelessly over the course of the year. I remain grateful to The Executive and on its behalf I would like to thank WNA’s wider membership and allied supporters without whom the positive steps that we have achieved this year could not have been realised.

I hope that readers find the content of this report informative and that it inspires continued and renewed engagement with WNA.

Ana Palazón

Chair, Wales Neurological Alliance.

July 2017

Influencing

Cross Party Group (CPG) on Neurological Conditions

During 2016 WNA continued to provide the secretariat for the Cross-Party Group on Neurological Conditions which met three times: February 2016, June 2016 and October 2016. The themes of the three meetings were as follows:

February 2016

The last meeting of the Cross Party Group in the fourth Assembly term saw Caroline Lewis of the Welsh Government’s Major Conditions Policy Team give a presentation on the first Annual Report of the Neurological Conditions Delivery Plan.

In June 2015, the Deputy Minister announced investment in

neurorehabilitationservices investing £1.2 million with three quarters of the funding being provided bythe Neurological Conditions Implementation Group (NCIG), the remainder being provided by the Stroke Implementation Group (SIG).

The two groups also agreed to a joint focus on patient experienceto gain a better understanding of the needs of people, thus investing £40,000 each. The last elementof the Neurological Conditions Delivery plan funding, £60,000, was spenton increasing access to specialist neuromuscular care advisors.

In relation to neurorehabilitation, nine bids were approved for recurrent funding as follows:

  • Aneurin Bevan University Health Board for community neuro-rehabilitation service (CNRS) - £206,000.
  • Abertawe Bro Morgannwg University Health Board for Early SupportedNeurology Discharge Team (ESD)/Stratified Community NeurorehabilitationTeam (with in-reach) - £152,000
  • Betsi Cadwaladr University Health Board for support towards establishment of a level 2 neuro-rehabilitation unit in North Wales - £100,000.
  • Cardiff & Vale University Health Board for community neuro-rehabilitation service (CNRS) - £174,000.
  • Cwm Taf University Health Board for a multidisciplinary community neurorehabilitationteam - £117,000.
  • Hywel Dda University Health Board for stratified, integrated community neurostroke rehabilitation - £145,000.
  • Powys Teaching Health Board for community rehabilitation - £96,000.
  • Neuro Muscular Network to develop a specialist physiotherapy service for adult patients with neuromuscular (NM) conditions - £60,000.
  • Welsh Health Specialised Services Committee (WHSSC) for a paediatric neurorehabilitation service - £150,000.

Health boards indicated they would not be able to use full funding for these services during the 2015/16 financial year. As only part year funding, of £337,000, was issued this year the remaining funding was issued for one-off basis for 2015/16.

Non-recurrent funding was allocated as follows:

  • ABMU – equipment to support neurorehabilitation - £129,000.
  • ABUHB – IT to support delivery of existing community neurorehabilitationservice - £146,000.
  • BCUHB - improve facilities for neurorehabilitation and stroke patients atLlandudno General Hospital - £173,000.
  • CVUHB – functional electrical stimulation equipment to support the management of patients with MS and Stroke - £100,000.
  • CTUHB – support for Multidisciplinary Community Neurorehabilitation Team -£79,000.
  • HDUHB - establishment of an advanced scope, multidisciplinary, peripatetic specialist neurological team - £92,000.
  • PTHB – training and support for existing community rehabilitation and reablement services - £31,000.

The Implementation Group agreed the following priorities for 2016/17:

  • Developing a co-productive approach to increasing awareness of neurological conditions.
  • Delivering clear consistent patient information.
  • Delivering access to neurology services for patients of all ages, consistently throughout Wales.
  • Developing consistent and coherent neurorehabilitation services for patients of all ages.
  • Developing and responding to patient experience and outcome measures.
  • All LHBs have produced annual reports which should be available on their individual websites.

The NCIG’s Annual Report showed some progress including decreased death rate, decreased waiting times, and decreased length of stays in hospital. It also showed research into quality of life indicators for people with neurological conditions and a significant increase in funding for neurological conditions in Wales.

The Welsh Government’s Neurological Conditions Delivery Plan is to be extended from 2017 to 2020.

June 2016

This was the inaugural meeting of the Cross Party Group in the Fifth Assembly term.

A background to the role and function of the Cross Party Group was given to new members and a summary of its achievements was given for the period of the Fourth Assembly; includingthe inquiries into Neurological Conditions (2011) and Access to Neurophysiotherapy (2013). This contributed to the previous Welsh Government’s commitment to produce a Neurological Conditions Delivery Plan. WNA responded and contributed to the draft Neurological Conditions Delivery Plan and, in addition, it gained places for three of its members on the Neurological Conditions Implementation Group.

The Government had also promised that the Neurological Conditions Delivery Plan would be refreshed in 2017 so the CPG will have a key role to play to ensure that the voice of people affected by neurological conditions is included in this process.

This was followedby the election of the Fifth Assembly Neurological Conditions Cross Party Group’s Chair and Secretary.Mark Isherwood AM, was voted in as CPG Chair, proposed by Ana Palazon and seconded by David Murray from WNA.

Megan Evans, WNA Coordinator was voted in as CPG Secretary, proposed by Dilwyn Jones and seconded by Lynne Hughes, also from WNA.

The opportunity was then given for Assembly Members to meet and discuss issues with members of WNA.

October 2016

At the meeting we heard from Alison Shakeshaft, Director of Therapies and Health Science, Aneurin Bevan University Health Board & Interim Chair of the NCIG who presented on the role of NCIG, progress to date, successes and challenges and refreshing the Welsh Government’s Neurological Conditions Delivery Plan.

The CPG also discussed its Forward Work Programme andagreed that it should revisit previous reviews and inquiries to check on progress against recommendations made by these. This included broadening out the review of care within emergency units to care within acute settings.

It was agreed that the Cross Party Group should also carry out a survey (or similar)of people living with neurological conditions about their experiences of the Social Services and Wellbeing (Wales) Act.

Given their central role in supporting people with neurological conditions, it was agreed that the CPG should review the neurological workforce, particularly specialist nursing provision in Wales.

The group also heard from Nina Bergonzi from the Dystonia Society South Wales Support Group who gave us a very comprehensive presentation on how living with Dystonia has affected her life and that of her family, particularly in relation to the lack of specialised services within Wales to treat her condition.

The Posture & Mobility Service

WNA continues to participate as third sector representatives in the Posture & Mobility Service, which has a number of sub groups that have stakeholder engagement.

The Partnership Board is an advisory group, established to advise the local Health Boards on strategies for commissioning posture and mobility services across Wales. This Board is accountable to the Welsh Health Specialised Services Committee (WHSSC).

The Partnership Board monitors the performance and quality of services delivered by the Posture & Mobility Service. One of its key terms of reference is to provide a stakeholder forum to enhance communication, discussion and two-way understanding of issues affecting the service. As a member of this Board, WNA has agreed terms of reference and membership.

The Stakeholder Reference Working Group is a sub-committee of thePartnership Board, with agreed terms of reference and membership. It was established as a means of addressing stakeholder interests and providing advice to the Partnership Board on stakeholder engagement.

The Stakeholder Group meets on a quarterly basis, at least one month before the Partnership Board, and the Chair of this group provides a report for each Partnership Board meeting. The effectiveness of the stakeholder group had become an issue in 2015/2016 due to lack of membership and structure. A new workplan was drawn up to address the key areas:

  • Appointment of a Chair.
  • Engagement with service users to enhance communication.
  • Visibility.

Key achievements for the Stakeholder Group

2016 has seen progress in the effectiveness of this group, particularly with regard to its visibility and role in helping to shape the developments of posture and mobility services in Wales. The membership has doubled, bringing fresh ideas, knowledge and skills to complement its existing membership.

A Chair has been appointed who has assisted in shaping the protocols for signing off work, which has been a great improvement in moving agenda items forward to completion. The group has, again, voiced its concerns about the Service Specification with some of its concerns being taken intoconsideration. After many months of discussion, the stakeholder group now has its own e-mail address to assist with wider communication. A new service leaflet has also been introduced. The focus for the coming year, for this group, will be the website development for posture and mobility service’s.

The Technical Working Group is made up of service managers, rehabilitation engineering and lead clinicians. The Partnership Board asked for stakeholder involvement in this, and two members of the Stakeholder Group sit on this operational group. It is meant to meet bi-monthly, but has not met regularly with a full complement of its members. WNA maintains that this group needs further development for stakeholder engagement to be authentic.

Neurological Conditions Delivery Plan

The Neurological Conditions Implementation Group (NCIG) oversees implementation of the Neurological Delivery Plan. WNA has three representatives on the NCIG, namely; Barbara Locke (Parkinson’s UK), David Murray (The Cure Parkinson’s Trust) and Kevin Thomas (MND Association). This has ensured WNA representation at all meetings and several task and finish groups and subgroup meetings.

The Annual statement of progress was made available on 31st March 2017 and available at

In the 2015/16 WNA’s Annual Report we statedthat WNA had made a strong case for the NCIG to invest jointly with the SIG to develop PREMS (Patient Reported Experience Measures) and PROMs (Patient Reported Outcome Measures) to drive improvements in the care system for people affected by neurological conditions and stroke from the perspective of those people receiving services.

Much work has been done over the last 12 months to develop and progress these measures. Over the next 12 months it is anticipated that Wales will have a PREM and a PROM which can be administered, collated and analysed on a national level that will be able to identify inequalities in health and social care provision across Wales, support evaluation of service development and demonstrate positive change over time.

The plan is to carry out a robust validation of the PROM proposed by the International Consortium for Health Outcomes Measurement (ICHOM) for use across stroke and neurological conditions across Wales.

In the 2015/16 WNA Annual Report we also highlighted how we supported the pooling of funding between NCIG and SIG to make £1.2m available to improve community rehabilitation services across Wales. As stated earlier in this report, all local health boards submitted applications to develop rehabilitation services across Wales. WNA took part in the decision making process, and supported the allocations of funding for projects across all local health boards. So far, implementation of the developments has been patchy with some local health boards having made significant progress in putting the funding to work whilst others have not yet spent any of the allocated funds.

Whilst Awareness Raising of neurological conditions is one of the NCIG’s priorities and WNA was asked to lead on this area of work, it is fair to say that progress has been slow. WNA has negotiated very strongly to make sure that this highly important area of work is given, not only the attention it deserves, but also the funding to ensure that the objectives can be delivered. We are pleased that we have secured £40,000 per year,over three years, to take this forward. Further details in the next section.[AP1]

The Neurological Conditions Delivery Plan’s Annual Statement of Progress highlights continuing progress in the development of neurological services. However, it recognises that more needs to be done. This is very clear to WNA as we continue to hear of people affected by neurological conditions not experiencing improvements in services to meet their needs. Therefore, we are pleased to be involved in the current refresh of the Neurological Conditions Delivery Plan. WNA will facilitate focus groups and submit comments on the refresh and will highlight the need for greater emphasis on the views of people affected by neurological conditions and the need for more robust outcome measures based on clinical guidelines and people’s experiences.

The refresh is in the final stages of consultation at the time of writing this report. The initial Delivery Plan ran from 2013 to 2017 and the refreshed plan will be extended to 2020.

Awareness Raising & PREMs

As stated earlier, WNA secured funding for a period of three years from Welsh Government through the Neurological Conditions Implementation Group (NCIG) to deliver a programme of Awareness Raising. This programme will focus on raising awareness of living with a neurological condition, the impacts that this can cause and the barriers that people with neurological conditions face on a daily basis, both as patients but also as citizens in their everyday lives.

The first phase of this work will be developing and finalising the Patient Reported Experience Measures tool (PREMs) to be utilised by the NHS in Wales for patients with neurological conditions including stroke.

PREMs: Patient Experience is defined as: what it feels like to be a user of the NHS in Wales and not only includes people who use Health Services in any setting, but includes their families and unpaid carers. A patient reported experience measure is any method of understanding the experience of individual or groups of patients. Responses are often collected directly from the patient via self-administered questionnaires completed by the patients themselves or via interviews.

WNA members may remember that we have already been involved in developing this work over the past two years, having now secured this funding we have the opportunity to develop it to its full potential. We look forward to the coming year.

Augmentative and Alternative Communication (AAC) Project Board

WNA was invited to become a member of the AAC Project Board that was set up to oversee the development of the hub element of a new service model for AAC in Wales. Funding had been provided by Welsh Government specifically for AAC for the first time – this included funding for staff and also two year funding for equipment. The Board also oversees the contractual and communication arrangements, monitoring and evaluation and provides recommendations for long term funding.

Carol Smith from the MND Association represented WNA in 2016.Five meetings were held in 2016, with WNA’s representative in attendanceat four of these. Update reports were provided after each meeting to the Executive committee of WNA.

Due to delays in the funding being released coupled with recruitment issues, the service took longer than anticipated in becoming fully established. In addition, the large increase in referrals to the hub, after the funding was announced, resulted in a long waiting list, however, this is gradually being reduced. Increase in funding has enabled extra staff to be appointed to the service including more therapists and clinical scientists and technologists. The funding for the equipment has also been allocated.

A Clinical Excellence Network has been established to exchange ideas and information, promote research, discuss policy, facilitate information sharing and learning and development between hub and spokes, and increase knowledge of speech and language therapists’ role within AAC.