Skip to content




February 2022 Support Collective Round-up:

Adults with complex support needs, their families and carers

We started this meet up with a grounding visualisation to enable members to relax and focus on our time together. The group shared with honesty some of the challenges they are facing, and this led to further discussion on these topics.

How do you cope?

Balancing caring responsibilities, life, and work is difficult and sometimes overwhelming, one member said that they were really struggling. The group shared experiences, listened, and gave each other some advice. Analogies of ‘spinning plates’ and ‘juggling balls’ were referenced, and it was clear that many members struggled to achieve balance and often it was their own needs that suffered. It was shared that austerity and the pandemic have rolled us backwards twenty years.

Friendship and peer support came top of the list of things that helped. Two members shared how their friendship began here, in an online meet-up and how their support to each other is invaluable as they have found someone who understands through shared experience. Another member described how Sibs – adult sibling support groups was a great source of support to them. Amaze have a range of support services for families of children and young people.

Talking therapy, meditation and mindfulness apps were recommended. Health in Mind is a free NHS service in East Sussex.


One parent carer shared that their son had not received any respite care for two years, yet this did not seem to be a priority for the local authority who said that the request would need to go to panel and waiting times for panel decisions were lengthy. It was discussed that respite services in the area have been lacking for many years.

Support staff and volunteers

Carers shared that it was incredibly difficult to attend medical appointments, veterinary appointments, etc., because of their caring commitments and they would benefit from a bank of staff or volunteers to contact for short-term cover. The local authority has expressed an intention to create a bank of support workers, we await further information.

Some resources shared:

Support With Confidence provides a directory of vetted and approved providers who offer a wide range of care and support services for adults in East Sussex.

The Personal Assistant (PA) Noticeboard is a free service that lists PAs looking for work and Direct Employers looking for PAs. However, it was raised that the PA noticeboard did not currently have enough candidates.

The Association of Carers free Befriending & Respite service gives unpaid carers the opportunity to take a weekly three-hour break from their caring role, while a carefully selected and thoroughly vetted volunteer spends time with the person they look after.

The East Sussex Personal Assistants Network (ESPAN) is a place where Personal Assistants can share their thoughts, ideas and concerns in a mutually supportive environment, and benefit from the experience of others.

Advocacy and representation

Regional variations of support available to carers was discussed. In East Sussex we have POhWER who deliver:

And The Advocacy People who deliver Independent Health Complaints Advocacy

The idea of a Carer’s union was discussed, ‘we don’t have a union to call on for our rights, unpaid care is so precarious and exploited – is there a way of ever unionising this?’


Transport can be problematic to organise when considering health needs, one parent carer explained costs could be incorporated into a transport budget as part of a Personal Health Budget and another carer recommended Driving Miss Daisy transport service.

The Mental Capacity Act 2005 and Lasting Power of Attorney

Discussion took place around the Mental Capacity Act and how capacity can fluctuate and change over time, and consideration for the future is advisable.

Further information:

Renaissance Legal who previously delivered a workshop for the Support Collective are delivering a Decision Making Webinar in conjunction with Mencap on 31st March 2022.

The next online meet-up is on Monday 21st March, 11am – 12:30pm: Parents and carers supporting children and young people.

To join these Zoom events, email Esther for a link, [email protected].



Read more Latest News