We wanted to hear from people with long term conditions about their experience of managing their condition and using services.
Around three quarters of you have more than one long-term condition. You told us there is too much focus on your condition in isolation and that disjointed services make you feel like you aren’t being treated as a whole person.
Nearly three quarters of you sometimes or often experience anxiety or depression.
Many of you talked about positive thinking and the value of having hobbies and volunteering. You also told us how much you value support groups and having contact with your peers.
Over half of you said you don’t use tools and technology to manage your condition.
The majority of you said you know how to stay healthy and reduce your risks of developing further health complications. You also spoke about wanting to manage your condition better and have more confidence and control.
While we know that condition-specific support has a role to play in helping people to manage their conditions, it is also important to offer whole person support for people who have multiple conditions. We are working on developing services that offer this sort of support, such as creating joint social care and health teams.
We are looking into how we can better support the mental health needs of people with long term conditions. We have joined a national network looking into best practice in this area and we have held a focus group for people with long term conditions and mental health needs. We are now exploring how we can offer people with long term conditions access to Improving Access to Psychological Therapies (IAPT) services.
We are working with partners in Hastings and Rother on a project to develop and support self-help groups in the area. A report setting out learning from this work will be shared in March 2017. We are also exploring how we can increase the number of peer supporters in the county.
We are working on a project to increase the use of Technology Enabled Services in the county. We want to make them available to more people and target them at those who would benefit most, such as people with long term conditions. We have already launched Health Help Now – a website and downloadable App listing common symptoms and suggestions for treatment in East Sussex, based on location and the time of day.
We are pleased that so many respondents said that you know how to stay healthy. We do know, however, that not everyone feels that way. We want to ensure that our services support those people who don’t have the skills, confidence and knowledge to manage their health. We are working on a project that will help people to self-care in a way that works for them and ensuring we tailor services so that those who find it difficult to self-care get the support they need. We hope to start the project in April 2017 and are currently watching with interest in other areas of England which are already doing this.
Results Updated 10 Aug 2016
The survey: Over 665 people completed the survey, although not everyone answered every question. Respondents have a wide range of long-term conditions and around three quarters of you have more than one long-term condition.
The survey asked about:
Support with your condition
Managing your condition
The focus groups: 24 people attended the focus groups, including five carers. All of the attendees were aged 35 plus and the majority had more than one long term condition.
The common themes across the focus groups were:
How you feel
How you are treated
Information and advice
Please download the results summary below for more detail about what people told us and the conclusions we’ve made.
We wanted to hear from people about their experiences of managing a long-term health condition, such as diabetes, stroke, heart failure and respiratory conditions, or any kind of physical condition that has an impact on how they live their daily life.
There were two parts to the work:
A survey of people with long term conditions that took place in January and February.
Six focus groups that were held in May across the county in Hastings, Hailsham, Uckfield, Bexhill, Eastbourne and Peacehaven.
The work was developed by the East Sussex Better Together partners (East Sussex County Council and the Clinical Commissioning Groups for Eastbourne, Hailsham & Seaford, and Hastings & Rother) and High Weald Lewes Havens Clinical Commissioning Group.
Thank you to everyone who took the time to complete the survey or attend a focus group.
What Happens Next
What people told us across the focus groups and survey will help us to plan services that empower people to manage their long-term conditions. We are now working on the recommendations that will form the next stage of this project.
More information on the recommendations and next steps will be published on the East Sussex Better Together website later this year. An easy way to keep up with developments is to register for our monthly e-newsletter. You can do this at our website or by emailing us firstname.lastname@example.org