Effective support from health and social services could improve carer well-being, study suggests

Pile of stones balanced
Brain with cogs going round

Long term neurological conditions get progressively worse and require greater dependency on others

This paper is particularly pertinent to commissioners of both health and social care, as it addresses the needs of informal carers of people suffering from long-term neurological conditions (LTNCs), such as Parkinson’s disease (PD), Motor Neuron Disease (MND), and Multiple Sclerosis (MS).

Implications of long-term neurological conditions

LTNCs get progressively worse, with sufferers becoming more and more dependent on family and friends as well as their formal carers. This can lead to low standards of well-being in these informal caregivers, such as depression, exhaustion, and a generally poor quality of life, as not only the patient’s lives become more limited, but so do the carer’s lives.


In this study, the authors highlight the issues faced by carers who are looking after people suffering from these conditions. They carried out a cross-sectional postal survey, by contacting people with MND, MS and PD (recruited via relevant national support organisations), and asking them to give the questionnaire to their main informal caregiver. They defined ‘caregiver’ as “a family member or friend who provides unpaid care (such as help with dressing and feeding or help with housework) to the patient.” They based their questions on existing, tried and tested questionnaires from the Picker Institute, and used physical and mental health measures alongside the Caregiver Strain Index as the carer-specific measure.

Word support with scaffolding and building equipment

Lack of sufficient support from health and social care services is one of the issues

The questions focused on practical issues such as:

  • Insufficient contact with medical professionals
  • Not being able to take a break
  • Lack of sufficient support from health and social care services
  • Not having the right equipment
  • Inadequate financial support or difficulties in getting any


They received 1910 responses (434 MND, 721 MS, and 755 PD), from carers, most of whom were women, although MS carers tended to be male. They evaluated the differences between the conditions, and while PD resulted in lower levels of physical health problems, the caregiver often ended up being a carer for a longer length of time, depending on the age of the patient. Mental health issues, such as depression, were higher in carers of MS. The Caregiver Strain Index found that MND carers experienced greater strain overall. Out of all the issues, the most common problem was not having enough time “to discuss the amount of caring with a health or social profession.”


Carer trying to give pills to the patient

This can lead to low standards of well-being in these informal caregivers

This paper is very important. At the moment, patient experience is high on all health and social care agendas, but with cuts being made to services, the need for informal carers is even higher, and as this research shows, there are gaps in the provision of adequate support for them. This is an opportunity for commissioners to ensure that not only patients are involved in their care pathway, but also the carer, who play a major part in the care of the patient as they not only spend more time with them, but they also know more about their needs and preferences than the health professional. As commissioners in health and social care, think about how much contact you have with caregivers and patients. Involve them, so that they understand what is needed. If caregivers are no longer able to care, then this will create a greater burden on the health and social care services, so it is vital that their well-being is supported and maintained.


Care quality of life and experiences of health services: a cross-sectional survey across three neurological conditions (PDF)
M Peters, C Jenkinson, H Doll, ED Playford, R Fitzpatrick
Health and Quality of Life Outcomes, 2013, 11:103

Further information

Picker Institute
Caregiver Strain Index (PDF)

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Caroline De Brún

Caroline De Brún

Caroline has been a medical librarian in a variety of NHS and academic roles since 1999, working in academic, primary and secondary care settings, service improvement, knowledge management, and on several high profile national projects. She has a PhD in Computing and currently develops resources to support evidence-based cost and quality, including QIPP @lert, a blog highlighting key reports from health care and other sectors related to service improvement and QIPP (Quality, Innovation, Productivity, Prevention). She also delivers training and resources to support evidence identification and appraisal for cost, quality, service improvement, and leadership. She is co-author of the Searching Skills Toolkit, which aims to support health professionals' searching for best quality clinical and non-clinical evidence. Her research interests are health management, commissioning, public health, consumer health information literacy, and knowledge management. She currently works as a Knowledge and Evidence Specialist for Public Health England, and works on the Commissioning Elf in her spare time.

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