CEP 2016 – John Holt, West Berkshire Neurological Alliance: Focus Groups

Three focus groups looking into issues surrounding living with a neurological condition, in line with local Clinical Commissioning Group and Long Term Conditions board priorities.

Report from Focus Group 1 – May 2016 – ‘My Experiences of Caring for Someone with a Neurological Condition’

The purpose of the focus group was to identify real-life experiences of being a Carer looking after someone with a neurological condition and to identify recommendations to service providers to improve the experiences of those in such a role. For full report click on the following link  WBNA Focus Group Report Carers Healthwatch July 2016

Main Findings

Those taking part in the focus group reported on a wide range of matters. These are summarised as:

  • The caring role is something that arises unexpectedly and is to a varying extent an unwanted role.
  • Carers and their cared-for do not always recognise that they are Carers, whereas third parties tend to use the ‘Carer’ tag more freely.
  • The caring experience is usually a mix of challenging and often difficult times.
  • Relationships can be affected in several ways, ranging from being ‘cut in half’ through to Carers needing to develop and deploy multiple mind-sets.
  • The caring role can lead to a wide range of emotional experiences such as: resentment, receipt of abuse, lack of gratitude, loss of shared decision-making, guilt, irritability, loneliness, exhaustion, not coping, worry, low self-esteem or the need to retain identity.
  • Carers appreciate variously being able to continue to work or continue to lead their own lives or have time for breaks or time for hobbies to help maintain dignity, self respect and good mental health.
  • Carers generally reported the need for good planning skills and resilience, to manage and accommodate change and to keep on top of critical matters such as the cared-for’s medications control, hospitalisation of the cared-for or looking after their own health, all in the context of likely increasing isolation and increasing workload and general lack of thanks or appreciation.
  • Some Carers are uncertain as to their entitlements.
  • Social Services and Carers Services are sometimes excellent but sometimes not. This applies to initial assessments, to follow-ups and to service provision. Carers report a tendency for Social Care to close cases that should remain open in most instances.
  • Uneven or undependable quality of care provided by some care agencies is a general concern, requiring stronger monitoring from the authorities.
  • Becoming a bereaved Carer potentially introduces a separate set of complex psychological challenges.

Recommendations

  1. Information about Carers Rights should be more widely available and be better targeted to all Carers.
  2. Social Services in Reading, West Berkshire and Wokingham should work more effectively towards ensuring that:
  • All assessments should be conducted more promptly, be followed up thoroughly and be actioned.
  • Carers’ assessments should be carried out early in the process.
  • There should be better continuity of staff involved in delivery of Social Care.
  • Carer training should be provided promptly where identified.
  • Reassessments should be provided in a timely rather than ‘annual’ or other random manner.
  • Cases should not be closed unless agreed with clients and Carers.
  • The overall quality of output from care agencies should be improved through better monitoring and regulation by the relevant authorities.

 

  1. Carers need the opportunity to see the cared-for’s neuro consultant at a frequency relevant to the changing needs of the Carer, to ensure best development of what could/should be done in the caring role.
  2. Carers should be offered higher levels of psychological support and physical help, including more breaks.

 

 

Report from Focus Group 2 – December 2016 – ‘My Experiences of Living with a Rare Neurological Condition’

The purpose of the focus group was to identify real-life experiences of living with a rare neurological condition and to identify recommendations to service providers to improve the experiences of those in such a situation. For full report click on the following link. WBNA Focus Group Report Living with a Neurological Condition Healthwatch September 2016

Report from Focus Group 3 – February 2017 – ‘Technology in the NHS: Patient Views on How Best to Support the Over 75s’

The purpose of the focus group was to discuss the likely needs, want and concerns of people over the age of 75 regarding the future use of technology in health and social care. For full report click on the following link. WBNA Focus Group Report Technology Over 75s Dec 2016