Creating a space for carers to share their voice.
Amy and Jayden
In our Carer Voices series, Rachel interviews Amy
about her life as a carer for her son Jayden.
We spoke to Amy about her life as a carer for her son, Jayden. Amy is a presence on social media and has raised awareness, in the mainstream media, of some of the issues that so many of us face. Amy is 41 years old and is from Cardiff. At the age of four, Amy's parents emigrated to the Falkland Islands, where she lived until 2015, when Amy had to make the decision to return to the UK in order to obtain better medical care for Jayden.

When Amy became a single parent, and carer, she had to give up her job in order to care for Jayden, who is 9 years old and has a diagnosis of Spastic Quadriplegia Cerebral Palsy. Amy states that "this means he cannot walk or talk, and is totally dependant on me." Amy describes Jayden with pride, saying "he is also very bright" and cognitively at the expected level for his age. It is lovely to follow Amy and Jayden's life on social media, as they have such a great relationship. We love seeing what they are getting up to in life and following Jayden's achievements. Amy is also a carer for her elderly Mum, who has a range of health conditions. It is with sadness that we heard Amy doesn't have a support network in the UK, as her sister still lives in the Falkland Islands. Amy is a carer for two family members.

Amy states that "my boy needs help with every aspect of his life" which is where the role of carer comes in. As a single parent carer, it falls to Amy to provide the support that her son needs in every area. Amy discusses Jayden's developing skills in being able to feed himself and comments that "his motor function is improving all the time in his right hand." As a parent carer, these achievements, these milestones, are so much more meaningful, as we know how hard our children have worked to reach them. Jayden also requires moving and positioning, physically transferring and pushing in his wheelchair. It is with concern that Amy states, Jayden is currently not provided with an electric wheelchair. This poses the question, what effect is this lack of mobility equipment having on both Jayden and Amy?
Amy has spoken in great detail about the current barriers to acquiring the quality of life she and her son deserve and I feel it is important to explore these. The main issue that is causing problems for this mother and son, at the present time, is lack of suitable housing. Amy describes their bathroom as being very small, and needing adaptations, to accommodate Jayden's needs, but being unable to carry them out. Amy needs a home in which her son can learn independence skills, in which Jayden can have the space to move freely in his wheelchair. In short, this family need to be provided with a wheelchair accessible home. She has become ill with the stress of trying to get her son the home he needs to thrive, as he grows into an adult. Often, becoming a homeowner is inaccessible to parent carers, due to the financial impact of not being able to work alongside caring duties. This is true for Amy and Jayden. Amy comments that "only a lottery win would enable me to purchase a property, with adaptations, so Jayden can have independence and I can care for him safely."

Amy feels that, in terms of getting her son the care he needs, she is not listened to. She feels that, as his mother, her opinions" don't matter". This is a theme that we see reflected in the lives of so many parent carers. It seems to be 'the norm'. Amy describes taking a year to get Jayden a very small care package and that accessing Direct Payments has been "extremely complex". With frustration, Amy describes meetings, upon meetings, where what needs to change is discussed, but nothing happens. This is devastating to hear.

Amy has never been on holiday, but despite needing respite from her caring role, she has not had a holiday in the 9 years she has been working as a carer. Currently, she is allowed 2 nights per month of respite care, which is "nowhere near enough". As a single parent, the physical aspect of Jayden's care falls solely to Amy and she needs regular rest, which she currently doesn't get. Amy would like to work part-time, but as Jayden has not been granted support for one afternoon a week, to enable her to commit to a job, she is not able to supplement her Carer's Allowance. Let me remind you that is approximately £67 per week.

When discussing what Amy feels carers need, from her lived experience of the role, she strongly points out "more financial security" which is a cry that is echoed by thousands of carers nationwide. Amy also feels that the role Local Authorities play needs to change. Attitudes towards facilitating good quality of life for disabled children, and their parent carers, need to be overhauled, with the family at the heart of the process.

" only a lottery win would enable me to purchase a property, with adaptations, so Jayden can have independence and I can care for him safely."
I'm a special needs mummy and always fighting.
On a finishing note, Amy talks about her worry and fear about what will happen to Jayden should she contract Covid-19. Who will step in as his 24/7 carer? There is currently no contingency plan for Jayden's welfare should this happen. Amy is also considering what the future holds as Jayden grows and she is unable to lift him herself. These worries need to be addressed. No mother should be frightened of what will happen to their child should they become ill. Amy and Jayden need more support. Real support. Not words or suggestions, but practical change and specific, needs assessed plans in place. They deserve to be safe, secure and supported.

Thank you to Amy for taking the time to share a snapshot of your life with us.

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