Helen: other parents give the best support
Huntingdonshire parent carer Helen cares for her 30-year old daughter Lizzie, who has Down’s Syndrome. Five years ago, Helen was widowed and now supports Lizzie on her own.
“Firstly, I’d say join the national charity that supports your child [or loved one’s] condition or disability as they are usually able to give advice on any issues that may arise.
“I joined the Down's Syndrome Association and if I’d consulted the benefits section, I might have secured Disability Living Allowance for Lizzie a lot sooner.
“Secondly, build your support network. Lizzie and I made good friends through the local Peterborough and Cambridge groups and through the various activities such as Bedazzle (Drama) Special Dance and Rebound Therapy trampoline.
“There was always someone who had experienced whatever period of change you are going through - secondary school, special not mainstream, the transition from child to adult services, benefits - who could explain what was involved and the pitfalls to look out for.
“They always understand that you’re not just having a moan. And throughout the years, and especially during lockdown, I have stayed in touch with my friends from these groups.”
Know your rights says Annie
Peterborough-based Annie cares for her bass player husband Jon, who has been spinal cord injured since November 1991.
The couple - pictured above - are professional musicians and their band Indian Summer play folk-rock and medieaval music.
From campaigning for more spinal beds at Stoke Mandeville Hospital to securing continuing health care funding, Annie admits she’s more than happy to take on the system.
Along the way, she’s challenged consultants, battled local authorities and enlisted help from her local MPs and the Parliamentary and Health Service Ombudsman.
“Not everyone has the energy to start or even keep fighting, I understand that. But at Stoke Mandeville they tell you: take control and don’t be a victim.
"It’s all about empowering yourself to do things and getting support, like advocacy services, if you need it.
“There are no shortcuts with disability. You have to find your own path."
Annie joined Peterborough Carers’ Partnership Board in 2018.
“I wanted to vent the frustrations that other people felt but didn’t dare say.
“We felt that the system was designed in a way that people couldn’t access the help they needed. Some people can’t explain how awful things are and what it’s like on the ground. And Jon and I didn’t want other people to have to struggle the way that we did.
“I never really saw myself as a carer – I was just Jon’s wife. But things changed because I wasn’t able to continue working as a full-time teacher and it was a big financial hit.
“Jon needed a lot of care and it was exhausting and frustrating. I couldn’t do it all on my own – and I needed a break.”
Get a carer's assessment
Getting a carer’s assessment is really important, advises Annie.
The assessment records what impact your caring responsibilities have on your life and particularly on your physical and mental health and emotional needs.
As a carer, you should be offered an assessment if the person you care for gets help from social services. However, you can also ask for one yourself – this is called a self-referral.
However, if you care for a child under 18, your needs should also be included in their assessment.
Annie’s top tips
- Look after yourself or you’ll get ill and can’t keep on caring
- Always trust your instincts
- If you’re going through hell, keep going
- Build a support network – outside your immediate family can sometimes work better
Take a look at our Carers’ Information and Advice article for information about local services, advocacy contacts, support groups and contacts across Cambridgeshire and Peterborough. Read
Looking after Someone, a practical guide from charity Carers UK could be a good place to start to find help and support. Find it here
Helen and Annie are members of Cambridgeshire and Peterborough Carers' Partnership Board. Find out more about the Board.