Sussex carers experiences of health care – research and findings

by | Apr 4, 2021 | Carer News, Carers voices

As part of The Sussex Carers Partnership, Care for the Carers were commissioned by the Sussex Clinical Commissioning Group (CCG) to undertake a research project to gather the experiences of carers across Sussex in relation to health and care during the COVID-19 pandemic. Family and friend carers across Sussex were given the opportunity to have their say and share their experiences. The Sussex Carers Partnership is formed of Care for the Carers, The Carers Centre Brighton and Hove and Carers Support West Sussex.

About the project

The aims of this project were to:

  • Seek the views of carers across Sussex regarding the challenges they have faced when accessing healthcare including being recognised as carers.
  • Establish if there are issues which may relate to a particular community or area of Sussex and differences compared to other areas and communities.
  • Identify the priorities for carers re healthcare services especially relating to Covid-19 and the vaccination programme.

Engaging with carers

During 2020, carer engagement opportunities were each hosted by Care for the Carers, The Carers Centre Brighton and Hove and Carers Support West Sussex.

The Carers Voices Conference was hosted by Care for the Carers in July 2020 and featured discussion workshops on topics, including sharing experiences of caring during Coronavirus, and a Q&A panel. Between October and December 2020, a survey was carried out online and by telephone with carers.

In January 2021, carers were invited to take part in a series of discussion workshops facilitated by The Sussex Carers Partnership.

On 24th March 2021, the research findings, along with six carer-informed recommendations, were presented at a plenary session webinar attended by carers and key decision makers from the NHS, Clinical Commissioning Group and local Commissioning Managers for East and West Sussex.

The plenary session prompted a debate around the strength and soundness of the six recommendations from the research. There is further work to be undertaken by the NHS and CCG to determine the feasibility of implementing the recommendations across Sussex and not losing the momentum of this work.

Summary of the main findings

The main conclusions of the research following engagement with carers are:

  • Communication between carers and health care providers is seen as inconsistent and leads to highly variable outcomes. This was already an issue for carers and has been exacerbated by the pandemic.
  • The negative impact of caring on mental health (including loneliness and isolation) is one of the single biggest issues expressed by carers.
    Identification of carers and recognition of carers’ expertise by health care services is generally seen as haphazard or poor.
  • Delayed/cancelled appointments and services due to the pandemic are still a concern.
  • Back up for carers and respite is critical.
  • Uncertainty about when/how carers will access the Covid-19 vaccine and concerns about the reasoning behind those they care for being vaccinated earlier than carers.
  • Covid-19 messaging from NHS and Government is ranked highest in terms of carers’ levels of trust, but this is not universal.


Recommendations from the research conclusions will be considered, and where agreed, actioned by the Sussex CCG.  Recommendations include:

  • Incentives to identify carers
  • The introduction of mandatory carer awareness for all healthcare staff
  • Centralised carer records
    To reduce the negative impact of caring on mental health
  • Regular and consistent messaging to carers about the COVID-19 vaccination programme and continuation on non-COVID-19 services
  • To produce a clear road map for services and support and options for carer support.

We want to say a huge thank you to our partners for collaborating and working on this project and to all the family and friend carers who gave up their time to be involved. You can read the research project reports and view the webinar slides and video below.

Have your say

We have various opportunities for carers to get involved and have their say about services, topics and issues that affect carers. Find out more about our Carers Voices Network here.

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