Neurological Alliance: Is localism working for people with neurological conditions?

Survey findings and recommendations September 2014

Read the full report

http://www.neural.org.uk/store/assets/files/460/original/Is_localism_working_for_people_with_neurological_conditions_FINAL.pdf

Neurological conditions have historically been poorly prioritised in the health and social care system. Neurological conditions are unique compared to other long term conditions – they are often not preventable, fluctuate considerably, can deteriorate rapidly and they last a lifetime. Lack of understanding and prioritisation has resulted in neurological services which are neither efficient nor person-led, creating a system which does not serve budget-holders or people affected by neurological conditions.

National policy and public affairs work remains important for neurology (particularly in relation to the direct commissioning responsibilities of NHS England and the broader NHS improvement framework). Increasingly however, the policy and influencing levers available to bring about better services are at local level. On 1 April 2013, the Health and Social Care Act 2012 came into force, bringing with it many new structures and arrangements for the NHS and social care in England. It created 211 new Clinical Commissioning Groups (CCGs) which control around 60 per cent of the NHS budget and decide which services to fund according to local needs. Health and Wellbeing Boards (HWBs) in each local authority area bring together health, social care and public health leads to develop a local Health and
Wellbeing Strategy (HWS) which informs commissioning plans across health and social care.

The new system also places greater emphasis on the role of people affected by neurological conditions in improving services. The most visible manifestation of this is local Healthwatch. This, along with other patient involvement mechanisms in the new structures, offers new opportunities for people affected by neurological conditions and their representatives to influence the health and social care system. People affected by neurological conditions need
to be equipped with the knowledge and support to effectively engage in new local structures. Local structures need to be equipped to allow for engagement with a population that has specific needs, such as the cognitive issues experienced by many people with neurological conditions.

Another characteristic of the new system is that increasingly decision-makers (politicians and commissioners) want to engage with patient organisations on a platform that is wider than one individual condition. Individual charities have different strengths, structures, and objectives. However the overall aim, stripped right back, is the same: to improve services and quality of life for people affected by neurological conditions. Many of the challenges faced by people affected by neurological conditions in relation to health and care are similar. This report is the first step in our response to the local influencing agenda. The recommendations outlined in this report show that we all have a part to play in
understanding and engaging with the new health system, and ensuring people affected by neurological conditions are able to do so.5

Summary of findings

  • These findings derive from a survey of 160 staff, volunteers, people affected by neurological conditions and carers which was open to complete between 29th January and 25th February 2014.
  • The majority of people surveyed take  part in engaging and influencing activity, but overall they feel this has become more challenging since the changes to the health and social care system in April 2013.
  • Staff members have a higher level of involvement in influencing activities within the new structures than volunteers, service-users and carers (with the exception of GP practices).
  • The most widely-used forms of engagement include attending stakeholder events and receiving newsletters and updates.
  • A considerable percentage of people, including staff, volunteers, people affected by neurological conditions and their carers are unaware of HWBs, local Healthwatch and Strategic Clinical Networks (SCNs) across the country.
  • A significant percentage of people are engaged in local hospital influencing activity, in particular people affected by neurological conditions and carers.
  • The majority of people surveyed work across neurological conditions because they find this to be very effective. It enables collaborative working and the ability to have a greater impact on services by representing a much larger group.
  • People suggested there is a need for health professionals, particularly GPs, to have more training and education on the range and complexities of neurological conditions.
  • Patient involvement was identified as key to achieving better neurological services locally, and patients need to be encouraged and supported to be proactive in these structures.
  • Respondents suggested there is a need for a neurological conditions champion within GP practices and other structures.
  • The barrier preventing the largest number of people from influencing locally is lack of knowledge about available opportunities for engaging with and influencing the new structures.
  • Time constraints and limited resources also prevent many people from effectively engaging and influencing locally.
  • The most common form of support that people require from the Neurological Alliance and other charities includes information resources on how the local structures operate and available routes for getting involved in their activities.
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