PEOPLE LIVING WITH NEUROLOGICAL CONDITIONS AND THE SOCIAL SERVICES AND WELL-BEING (WALES) ACT (2014) BRIEFING NO 1: NOVEMBER 2018

Social care is failing people living with neurological conditions in Wales

 The Social Services and Well-being (Wales) Act (2014) has now been law in Wales since 6th April 2016 and aims to transform the way that social services are delivered.

The Cross-Party Group on Neurological Conditions (CPG) asked the WNA to collect information on how the implementation of the Act is having an impact on people with neurological conditions.

We conducted a survey of people living with neurological conditions in Wales and this found that people living with neurological conditions are missing out on vital support and services;

  • 73% have not been offered or requested a formal assessment;
  • 80% did not receive any services from a local council as a result of a care plan;
  • 64% did not see any information that would help them with a social care or support need; and only 37% were given advice from a professional that would help with a social care need;
  • 79% have not been referred to other organisations for support;
  • 46% have paid out of their own money for additional support.

Mark Isherwood AM, Chair of the Cross Party Group on Neurological Conditions said;

‘We are deeply concerned that a significant number of people living with neurological conditions are missing out on vital support and services.

‘Local Authorities and Local Health Boards are duty bound to conduct a population needs assessment but it is clear from our report that they need to do a lot more to better understand the needs of people living with neurological conditions who may be in need of services’.

Ana Palazon Chair of the Wales Neurological Alliance which conducted the survey on behalf of the Cross Party Group, added;

‘There are an estimated 100,000 people living with a neurological condition in Wales.

‘Our survey found that people living with neurological conditions are not being asked what matters to them; they are not being made aware of their rights to an assessment, not getting information about support and advice services, and having to pay out of their own pocket for support.

‘The Social Services and Well-being Act has now been in force for over two years and it is wholly unacceptable that we find ourselves in this position today’.

 

People living with neurological conditions and the Social Services and Well-being (Wales) Act November 2018 (1)Pobl sydd yn byw gyda chyflyrau niwrolegol a Deddf Gwasanaethau Cymdeithasol a Llesiant (Cymru)Tachwedd 2018 (1)

 

 

 

2013 Summary for web site.

2013 has been an important year for the Wales Neurological Alliance (WNA) to raise the profile of neurological conditions.

 

We have seen developments across various key areas. Of significance has been the changes we highlighted following our review of neurophysiotherapy services across all Local Health Boards (LHBs).

 

Whilst indisputably improvement remain to be made, the degree to which most LHBs have implemented the 12 recommendations made by the Cross Party Group for Neurological Conditions’ report on neurophysiotherapy services (February 2013) is encouraging.

 

Indeed, the work programme that WNA has followed in collaboration with the Cross Party Group has addressed central areas for further development. For example, the examination of neuropsychology services, based on the report produced by the West Wales Neurological Alliance, has provided us with a platform to widen attention to this important service area.

 

This year we were also able to launch the Service User and Carer Participation (UCP) programme in partnership with NEURODEM. Providing grant giving for assistance to people affected by neurological conditions to be involved in research.

 

Crucially, 2013 has seen the launch of the Welsh Government’s Delivery Plan for Neurological Conditions. WNA welcomed the opportunity to assist the Welsh Government to inform this important document.

 

This plan provides the Welsh Government with an effective tool for population health planning. However, as importantly from the WNA’s perspective, the plan makes LHBs accountable to people affected by neurological conditions as, from this point onwards, it provides a yard stick against which progress will be measured. This is a welcomed, long awaited initiative.

 

In this regard, the WNA will continue to exercise both its collaborative and watchful role, particularly as improvements to services for people affected by neurological conditions are to be achieved within the stringent demands created by diminishing public funding.

 

WNA’s achievements are totally dependent upon the collaboration of all members organisations for whose support I remain grateful.   I would like to extend my appreciation to the members of the Executive Management committee who have ensured WNA’s working subcommittees can focus on the priorities facing us.

 

 

 

Ana Palazon,

Chair, Wales Neurological Alliance and Director Cymru, Stroke Association

 

 

Summary of activities 2012.

 

By Joseph Carter (MS Society Cymru), Chair, Wales Neurological Alliance

 

The Wales Neurological Alliance (The Alliance) has gone from strength to strength in 2012 and I hope that in 2013 we can rise to new challenges and continue to influence services for our members in a positive way.

 

We have reorganised ourselves and created sub groups to take our work forward so that we can deliver on our one Aim and four Objectives. These are:

 

 

AIM

 

To improve services for people affected by neurological conditions

 

OBJECTIVES

 

  • To engage and work in partnership with people affected by neurological conditions

 

  • To raise awareness of neurological conditions and their impact on individuals and their communities

 

  • To inform and influence policy makers about the needs of people with neurological conditions4. To support and promote appropriate research    In the past twelve months, The Alliance:

 

  1. We have reformed our processes and appointed a new coordinator, Maggie Hayes, to help broaden our reach into social services, as well as health, and assist in greater engagement of our members.
  2. This new focus has allowed the Alliance to better plan its work and respond to issues that reflect these aims and objectives, rather than risk being distracted from our shared priorities.
  • Has worked with Neurodem to influence neurological research in Wales. This partnership saw us host a conference in Cardiff in November and has been a great opportunity to use our shared networks of researchers and service users interested in research.
  • Held four meetings of the Cross-Party Group for Neurological Conditions and used this as our principle tool to influence Welsh Government and opposition politicians. The group has focussed on the neuroscience review, wheelchair waiting lists and held an inquiry into Neurophysiotherapy.
  • Contributed to the work of the neurosciences reviews in North Wales and work to influence change in mid and South Wales. In North Wales the work is still ongoing and we remain active stakeholders, whilst the project has officially finished in mid and South Wales. The challenge will now be to ensure that the proposals are delivered locally.
  • Has built relationships with senior politicians and professionals. The Alliance meets regularly with the Welsh Health Specialist Services Committee (WHSSC) and meets with the Minister for Health and Social Services.
  • Successfully lobbied the Health and Social Care Committee to hold a short inquiry into wheelchair waiting lists. The committee reported in summer 2012 and exposed the poor communication between WHSSC, Health Boards and the third sector. Although progress appears to have been made in mid and South Wales, long delays remain in North Wales. The Alliance has since been invited to sit on the Posture and Mobility Partnership Board to oversee reforms to the service.
  • Has started the process of mapping key contacts within our constitute charities so we can better engage with the membership and local alliances.The Executive Committee continues to meet every six to eight weeks – a reflection of the amount of work we undertake, but also of the membership’s commitment to work together.We wish to thank everyone for their support over the last year. It is impossible to name them all, but without financial support, hours of voluntary work, expertise and advice, we would not have achieved so much. I would especially like to thank Judi Rhys who stepped down in October and Terry Moseley, our former coordinator who left in July. They were both important members of Alliance and we are extremely grateful for all of the work they have done.

 

 

 

 

The Alliance has been busy and productive during 2009 and 2010. Our membership continued to grow and our networks widened as we strengthened our partnerships with local alliances around Wales and forged strong relationships with several professional groups and organisations.

Over this period, the Alliance…

  • Contributed to the deliberations on the future of neuroscience health services planning and delivery following publication of the Steers Review.
  • Undertook a questionnaire survey of individuals living with neurological conditions in Mid & South Wales.
  • Strengthened our links and networking with the Cross Party Group of Neurosciences in the National Assembly for Wales.
  • Submitted responses to several Welsh Assembly Government and National Assembly for Wales consultations and inquiries.
  • Participated in several Welsh Assembly Government working groups.
  • Improved communications and networking with members by producing a regular news sheet keeping members informed about the Alliance’s work.