Other long-term conditions & frailty
Who are the Community Team?
Our team of Community Wellbeing Workers along with two specialist cancer workers support carers of someone living with a long-term condition not covered by one of our specialist teams. Quite often the people we support are in a co-caring situation and/or coping with multiple diagnoses.
Some of the conditions we have supported carers with include:
- Someone living with a neurological condition: Parkinson’s, Multiple Sclerosis, Motor Neurone Disease or following a Stroke
- Physical Disabilities
- Chronic Cardiac Disease
- Respiratory Conditions: Asthma, COPD
- An acquired brain injury
- Sensory loss
- Frailty/Mobility issues
Underpinning all our work is our support for you to improve and maintain your own health and wellbeing whilst caring for others.
How we can support you
- A call from a Carer Wellbeing Worker with knowledge and understanding of where you live and the condition you support in your caring role. If a specific condition is something we don’t see often, we will take the time to research and find out as much as possible to support you. Currently we can offer these calls via Zoom, if preferred.
- Information, signposting and referrals to organisations that may help you and the person you care for.
- Support to complete some funding applications
Cancer: the team has two full-time specialist workers supporting carers of people living with cancer and also carers with a cancer diagnosis themselves, focusing on how this impacts an existing caring role.
All too often a cancer diagnosis sets in place a rollercoaster ride for both the person with cancer along with their family and friends. Carers often need to help the person they care for through a minefield of clinical, emotional and practical issues but, with the focus understandably on the person with the diagnosis, may not recognise themselves as a carer; someone with their own needs, concerns and potential health issues.
- The Community Team hosts monthly sensitively facilitated peer-support carer groups, giving you the chance to meet other carers with a common bond, and to share experiences and information. These sessions give you chance to check in and say hello to others, to talk or just to listen, to ask questions, share experiences and learn more about our services. You are welcome to pop in for as long as you like.
These virtual groups are being hosted online using Zoom. One of our team will contact you before joining a group to talk through the process and address any concerns. Many have been surprised at how easy it is.
Our Community Team also liaises with all the GP surgeries across the county. We ensure surgeries have up to date literature and resources to support carers. We also attend surgery events and offer training sessions for surgery staff to ensure they recognise carers and can understand what it is like to be a carer.
Informing your GP of your caring status
Every GP surgery is expected to maintain a register of carers and should have a member of their team identified as their Carer Lead. It’s important to inform your surgery about your caring role and responsibilities, so that you are added to that register. Being identified as having a caring role, ensures the surgery can then be as flexible as possible around appointments, support for you to stay healthy, give access to screening/flu immunisation and contact you with relevant events and information.
Maybe, next time you are speaking to your surgery you could check you are registered with them as a carer and find out the name of their dedicated Carer Champion/Lead?
Helpful links and resources
This service is available to you as a registered carer to access equipment and assistive technology. The primary aim is to help maintain and enhance independence and give peace of mind in your caring role. We will assess the individual needs unique to you and the person you care for. It is our position to be there for you in every way possible, helping improve independence, safety and wellbeing.
If you are providing necessary care to an adult, you may be entitled to a full Carer Assessment regardless of the number of hours of care and type of care you provide. This includes if you care part time or do not live with the person you care for. A Carer Assessment is to find out what services and support you as a carer would benefit from and how caring effects your life, physically, emotionally and mentally. It is also an opportunity to discuss if you are able or willing to carry on caring.
Useful external links
Age UK provide support for you or the person you’re caring for on their discharge from hospital. Age UK could help with up to six weeks of free social or practical support.
Are a team of health professionals who aim to promote the health and wellbeing of carers. This free service is provided by Sussex Community NHS Trust providing support for carers over the age of 18 registered with a West Sussex GP. They work directly with carers and will develop individual strategies for each carer with an aim to reduce the strain of coping with their caring role.
Providing you with information and advice to help you look after yourself, stay safe and connected with your local community.
TuVida provide help and support to carers and the people they care for across West Sussex.
To find out more about their current provision, please click the relevant link below:
- Day centres and groups: A change of scenery for people receiving care and support, as well as the opportunity to meet new people in a fun and relaxing environment. Find out more.
- Carer respite: Home care provision that enables periods of respite for carers. Find out more.
- Children and young people – Short Breaks Service: Support for young people aged 11-18, who have medium to high needs and are socially isolated or not attending education. Available in the Arun, Adur, Worthing, Chichester and Horsham areas. Find out more.
Condition-specific National/Local Support - Useful Websites
- Macmillan Cancer Support
- Help and support for people affected by cancer in West Sussex
- Macmillan Guide for Carers
- Macmillan Guide for Young Carers
- Cancer United
- Albion in the Community
- Cancer Care Map
Motor Neurone Disease
Acquired Brain Injury (ABI)