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Support Collective January round-up

This month we hosted two online meet-ups, one attended by parents and carers of children and young people and the other bringing together carers, supporters and adults with complex needs.

Here’s a summary of information shared and resources to support you.

Children and Young People’s session

This morning session was attended parent carers with young children at home or on partial timetables with school or college during lockdown.

The group highlighted how children are now struggling with social activities and going outside after being isolated for so long. One parent is looking for PA support for her son who has now secured a personal budget through his Education Healthcare Plan (EHCP). Another parent is looking for a more sustainable college placement for her 16 year old son. One parent was able to give lots of advice on this surrounding the EHCP and how the parent can make sure she utilises this to its full potential. A parent of a 4 year old son wants to make sure she’s choosing the right school for his needs, which is particularly challenging when tours of the schools are virtual at the moment. The group came together to offer mutual support and advice.

Further resources

Young Minds – Tips, advice and where to get support for your child’s mental health during the coronavirus (COVID-19) pandemic.

Special Needs Jungle – Parent-led information resources and informed opinion about children and young people 0-25


Children with SEND most disengaged from remote learning.

Adult session for people with complex needs, their carers and supporters

This meet-up was attended by a disabled person managing their own care team, two family carers of their adult children with complex needs, a family carer managing a supported accommodation service and a care team for their adult son, and a family carer managing a care team for their adult son.

We talked about some the current challenges linked with the pandemic, shared how we were managing and what gives us hope.

Some of the issues included:

People who manage their own care and support are not a Care Quality Commission (CQC) registered service 

Those managing their own care provision who aren’t CQC registered aren’t part of the rollout of tests to providers. Those managing their own care are in discussion with the local Public Health team about access and have been advised to go to community testing centres – there are delays in getting test results back which can mean no support worker. Someone with complex needs can’t turn up at a testing centre either as it’s not accessible to them.

East Sussex County Council (ESCC) has signposted to Support with Confidence who are dealing with testing. Another group member highlighted the Support with Confidence don’t deal with PHB funded Personal Assistants (PAs), only self-employed PAs. A group member commented that they’re managing a large care team of similar scale as a care home yet aren’t getting any guidance.

One member of the group commented that the main issue all the way through the pandemic is not being CQC registered and that their son with complex needs has not been contacted about the vaccine yet. They suggest this group works with other related organisations to complain to Public Health England about this.

Covid-19 Vaccine

Another issue raised is some PAs refuse to be vaccinated, which is a grey area and is likely to escalate on all care settings. It’s very difficult recruiting and retaining a care team, “we are completely dependent on them so don’t want to lose them.”

A group member shared that vaccination passports are likely to be introduced and that this might be an incentive for everyone to be vaccinated. Another group member considers herself as a key member of their daughter’s care team so issued themselves a letter and has had the vaccine. This wasn’t challenged. Another member was able to get a vaccine through their GP but has not had any information on the date of the second vaccine which is causing unnecessary stress whilst hospitals are booking the second jab straight away.

Continuing Healthcare PHB user experience

A group member shared that Disability Inclusion are looking for anyone in receipt of PHBs / funded through CHC to get in touch as they are forming a focus group to feed back to CHC on their experiences. Contact Theresa Hodge:

Coping strategies

A group member offered to share their contact details with another group member to chat and for their family members to have an online meet-up.

One group member is organising a disco night every Saturday so their family spend the week working out what they’re going to play at the weekend. They also set up a garden gym 2-3 times a week. Project Art Works is looking at more interactive creative workshops in February and March.

Useful links

Campaign to include unpaid family carers in the Covid-19 vaccine priority groups:

A brilliant new book by Madeline Bunting ‘Labours of Love – The crisis of care’ is well worth getting. It articulates beautifully a multiplicity of experiences.

Talking therapy and counselling services

Health in Mind:

Counselling Plus:


Dates of next meet ups can be found here: 

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