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“The thing I have found hardest, as a carer, has been the fact that I’ve had to fight for everything…”

Carers Rights Day is on the 26 November and the theme for this year is: “Know Your Rights”. For many carers, being able to access their carers rights can be difficult. In fact, many carers are often unaware of the kind of help that is available to them. 

Suzanne is one of those parents who has found finding the right support and information difficult. She is a mum of four, a trained paediatric nurse and research nurse. Suzanne’s 12-year-old son, Milo, became very unwell a few years ago. Until last year, she had been managing to combine all her roles and responsibilities. However, last September she reluctantly made the heart-breaking decision to give up her much-loved role, to become a fulltime carer for Milo. Read her carers’ journey below.

She said: “I trained at Great Ormond Street Hospital as a paediatric nurse. I worked there for a few years before moving back down to Southampton where I worked as a care manager in a children’s hospice and then more recently at University Southampton Hospital, in paediatric research. I absolutely loved my role! I met so many interesting people and it was a bit of respite from the demanding role of looking after Milo and the rest of the family.”

Suzanne describes how Milo first became unwell.

“He first became unwell at the start of Year 5 whilst at primary school. He’d previously had long-standing gastro problems and I guess he’d always been a little anxious, but we’d managed OK,” she said.

“However, during that year he became unwell mentally, his anxiety increased, and he became more withdrawn. He would scream when I had to take him into school. At first, I thought he was just being defiant so I would still take him in even when he was screaming. I feel so bad when I look back now but at the time, I thought I was doing what was best for him.

“He’d also started running away when things got too difficult for him. Everything was finally brought to a head when he threatened to kill himself. Thankfully, I managed to get the knife from him, but I realised things were now very serious. I felt like my only option was to book him in to see a private psychiatrist who diagnosed him with Anxiety, Depression, School Phobia, and suggested he get tested for Autism.

Following this, we finally managed to get him seen by Children and Adolescent Mental Health Services (CAMHS) who agreed to assess him. He is currently being assessed for Autism and ADHD and Oppositional defiance disorder. However, it still needed to be formally agreed for it to be put into his Educational, Health and Care Plan (EHCP) which is a document which outlines any special educational needs a child may have.”

Suzanne goes on to explain how becoming a full-time carer affected her and the rest of the family.

“During this period, I was still working. My GP signed me off work for seven months, and my manager and team at work were supportive,” She said. “However, that was a short-term solution and I then decided I needed to give up work and it was heartbreaking. I felt like I had lost my sense of identity. I’d had a job which I loved and now I had to give it up. Consequently, I became depressed and sought medical help and intervention through my GP. Medication and online Cognitive Behaviour Therapy (CBT) have helped and some days are better than others but it’s still tough!

“Our family dynamics have changed as well. Both my husband and I and Milo’s dad had to learn how to parent differently. Sometimes Milo’s siblings struggle as they feel like he can get away with things that they aren’t able to. It’s made even more difficult because on the outside Milo looks like any other young lad. You wouldn’t know he had any kind of special needs. So, I can really relate to people who have a hidden disability because people often don’t believe there is anything wrong. I found it helped to explain to the kids that if Milo couldn’t walk, we wouldn’t expect him to go upstairs - and so his disability is no different, and as a family we make allowances.

“As a carer, the thing I have found hardest has been the fact that I’ve had to fight for everything. I have worked as a nurse and thought I had a little insight, but it’s still hard. I can’t even imagine how difficult it must be for kids whose parents don’t know where to start.

“Since lockdown, it’s been easier in some ways as I don’t have to take Milo to activities or as many appointments so he can be at home - which he loves. The online Facebook support groups have been amazing too such as Re minds in Southampton who are a parent-led support group for families who have children or young people with autism or mental health issues. Even though they are based in Southampton parents can access their services from anywhere. I also try to look after myself by doing bits of yoga when I can, eating well, and getting plenty of sleep. Wine and good friends help too.

“I have vowed to myself that I will not let Milo fall through the net. Any activity or service that he is offered must be meaningful. I am determined to fight to make sure that he gets what he needs to be happy and successful. I refuse to let society tell me who he can or can’t be.”

If you are caring for someone and want to know more about your rights, click here to read  Carers UK’s, Looking after someone guide. Please click this link for the for Re minds website http://www.reminds.org.uk/

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