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Have Your Say

At Carers Support, we genuinely care about the thoughts and experience of our Carers. To get a better grasp of the daily challenges that Carers face, we launched an in-depth Carer Consultation this year.

Carer Engagement Consultation 2023 Results

To ensure our services are meeting the demands of unpaid family and friend carers in our county, we conducted a carer consultation to help us better understand the issues and challenges carers are facing in this current climate. A staggering 841 Carers were involved in this engagement, which included a survey (online and postal) and focus groups. A summary of the key findings include:

Top three challenges and barriers for Carers: 

  • Feelings of stress
  • Managing own physical/mental health
  • Missing out on socialisation because of caring

Ways which help overcome identified challenges and barriers for Carers:

  • Affordability of local services (including respite)
  • Financial assistance (e.g., benefits advice, grants)
  • More choice and control

Things that help Carers continue to care:

  • Emotional support (counselling, check-in & chat)
  • Funding to support time out from caring
  • More support for my own mental health

60% of Carers agreed that their mental health had been impacted by the cost-of-living crisis.
40% of Carers had money worries and financial insecurity worse than 2020 (pre-pandemic).
59% of carers disagreed with the statement: ‘I have more opportunities to connect with other Carers in similar situations now (2023), when compared to before the pandemic (2020)’.

Most important to Carers (out of Five Big Ideas, presented in the original strategy consultation in 2020) were:

  • Funding for Carers’ breaks increased to support more carers to access respite – a first choice for 33% of Carers.
  • Reducing financial hardship as a result of providing unpaid care – a first choice for 29% of Carers.
To read more about the results, please download the full report here.

Making Carers Count: Developing Support for Ethnic Minority Carer Communities Across Sussex

As the Sussex Carers Partnership, we understand how crucial it is to work together and involve unpaid family and friend carers, in the design and delivery of local carers’ support services.

Together, we have secured funding from Carers Trust* to help develop services that will address the barriers, challenges and needs experienced by under-represented carers from minority backgrounds across Sussex.

Over the next two and a half years (2021- 2024), we will utilise carers’ experiences to support ethnic minority carers to access essential services, expand and develop new specialist services and work with health and social care providers to remove barriers to support.

Through the ‘Making Carers Count’ project we will deliver:

  • Improved and better access to information, advice and services (including translated resources) that will help carers manage their caring role and situation.
  • Increased carer identification through the delivery of Carer Awareness training for local health and social care workers designed and delivered by carers.
  • Delivery of specialist training for carers to help support and maintain their physical health and wellbeing and help to build their resilience.
  • Culturally specific and/or language matched counselling support (presently, this service is only available to carers registered with Carers Support West Sussex)

Deliverable through a dedicated Sussex Carers Reference Group set up to support this project. If you are interested in volunteering as part of this project, please contact Adeelah Khan on 0300 028 8888 or email using the subject line ‘Making Carers Count’.

*Funded by Making Carers Count, a Carers Trust partnership programme supported by the Covid-19 Support Fund.

CSWS Carers Strategy Refresh

In December 2019, a project team was formed combining resources at Carers Support West Sussex (CSWS) and West Sussex County Council (WSCC). The aim was to engage with carers and stakeholders in West Sussex, using a mix of surveys and focus groups to discover, ‘what carers want locally’.

The research findings told us that carers and stakeholders, in West Sussex, are calling for:

  • Carers to be identified, involved, and valued
  • Greater choice and control to help maintain a balanced life and care well
  • Improved social opportunities for Young Carers
  • Independent carer advocacy support
  • Carers to be supported at each stage of the caring journey
  • Connecting carers to peer to peer support and learning
  • Reducing the financial hardship
  • Inclusive support for seldom heard carer communities
  • Support for working carers from employers

The final Carer Strategy will be ready for final agreement by our Board of Trustees in Autumn 2021.
Read our Primary Research Insight Report to view information into carer insights, including a summary of carer-led discussions testing the strength of the above recommendations.

Read the Secondary Data Research Report, which involved pulling together 13 reports and surveys on a local and national level to paint a full picture on the state of care.

Sussex Carers Partnership | Your Views Explored

As part of the Sussex Carers Partnership, we were commissioned by the Sussex Clinical Commissioning Groups (CCGs) to undertake a research project to gather the experiences of carers pan Sussex in relation to health and care during the COVID-19 pandemic.

On March 24, the research findings, along with six carer-informed recommendations, were presented at a webinar, which was attended by carers and key decision makers from the NHS, CCG, and local Commissioning Managers for each county.

The plenary session that followed the research findings prompted a debate around the strength and soundness of the six recommendations. And whilst it was encouraging to hear the Research Report described as a ‘mandate for change’ in improving the health inequalities carers face. There is of course further work to be undertaken by the NHS and CCG to determine the feasibility of implementing the recommendations across Sussex in a timely manner so not to lose the momentum of this work.

A huge thank you to our counterparts at The Carers Centre for Brighton and Hove and Care for Carers (East Sussex) in delivering this collaborative project, and the family and friend carers who gave up their time to be involved.

Read the Report: Research into Sussex Carers Experiences of Health Care

Read Summary of Discussions from Webinar

View the Webinar slideshow

Carer Voice Network

Through our extensive carer engagement work, we know Carers want to be seen, heard and included. This network aims to provide a platform from which Carers hold a strong and active voice to influence and co-produce their local service and challenge system leaders to create change for Carers in everything they do.

Have you ever thought, ‘I think that service could be improved if they did x, y and z’? Have you wanted to express your views but unsure where and how to get your voice heard and with effect? If you have these feelings, we would love for you to join our Carer Voice Network.

Here at Carers Support, we put Carers at the heart of all we do, and by sharing your ideas and insights, you can help create positive change for Carers.

Carer Insights on Hospital Discharge

As part of the Sussex Carers Partnership (Brighton & Hove, East Sussex, and West Sussex), we want to hear from unpaid carers like you about your experience of helping someone you care for through a hospital discharge process. The survey takes around 7 minutes to complete and closes on 5 March at 12 noon.