23/11/23

This is Miriam’s story

“The GP herded me towards the door as I was saying: “I’m not coping, what do I do?” She held the door open and said: “Try Quarriers”.”

Miriam is a full-time carer for her daughter. Both her son and daughter have a range of complex medical conditions that have taken many years to diagnose correctly. In that time, Miriam has had to fight especially hard for her daughter’s rights with little support.

“I thought I had better try Quarriers because I knew I needed help. I am a widow; I was scared to ignore the doctor’s recommendation as a single mum. If I am honest, I really didn’t expect much from Quarriers.”

Initially, Miriam had been assessed by the Access team to have no needs on the basis she hadn’t been to her GP in years. That was why she had gone to the GP who herded her out the door in the first place.

“Because I have a genetic mast cell condition, I don’t tolerate medications very well, so going to the doctor is often pointless.”

She was invited by Quarriers to have an assessment to find out more about her situation.

“Quarriers were genuinely confused as to why I had been ‘ignored’ and left in limbo for so long.”

“I must mention, because it mattered so much, that the first question of the assessment was: “Are you prepared to continue to care for this person?””

“Well, it’s my girl, of course I am. But I can’t describe how much it meant that someone hadn’t already decided that I had to do everything. Every single time they asked me that, it meant the world to me. It’s really important that there is a right to say no.

“When I was picked up by Quarriers this time, it resulted in me being awarded Severe Disability Premium, I am very thankful for that. It had been vital to keeping her safe.”

Miriam went through a horrendous time trying to get the right care for her daughter who, in desperation, had made a complaint with the medical ombudsman.

“Even though complaints were upheld, we paid a high price for rattling that cage.”

During that time, Miriam said: “Quarriers was all I had to lean into. I thought I was going mad at some points. Particularly after she was diagnosed, I was asking for care, but we were still getting nowhere. It took seven years for her to get an appropriate diagnosis and treatment, and she nearly died several times. it was completely avoidable.”

Having grown up with brothers, Miriam says that Quarriers feels like a sisterhood. “I’ve never had a sister, but it feels like a friend or sister saying hey, are you ok?

“I was recently asked to give feedback on the service which I was happy to do. I love being part of the solution, and it’s always lovely to interact with the Quarriers folk.”

As she was leaving the feedback session, Miriam was given a little token of thanks. Nothing too special.

“It was a lovely little box and inside there was a box of Sudoku, some colouring pens and pencils and colouring sheets and some sweeties. The goodwill of it all was just so gorgeous. I walk away from Quarriers feeling a little bit more whole every time.”

“I walk away from Quarriers feeling a little bit more whole every time.”

Miriam was invited to Quarriers Moray Carers Service to meet up with other carers.

“It was a lovely lunch and it’s delightful to be with other carers. Usually, we are thrown together in some angst-ridden situation, but our only job was to be together. The incredible validation of being listened to, and to know that whatever you were saying, people actually cared about, it is so rare.”

During Covid, Miriam enjoyed visits from one of the Quarriers team, who would meet her to go out for walks.

“We had lots in common. I knew that she was keeping an eye on me. I think that without that reassurance, I would still be floundering, and I doubt whether my daughter and I would still be here.

“Occasionally the team at Quarriers would let me know that there was some money in the pot for me to do something nice for myself.  I decided to upgrade my bike to an e-bike. It makes fresh air possible. It’s like a friend pushing you up the hill, ‘cause I’m not fit enough to cycle up. Every time I sit on the bike I have a profound sense of gratitude to Quarriers for giving me it.”

Carers have rights and in Mirriam case, Quarriers Carers Support Services (Moray) was there to offer advice. They can help with advice on which benefits to apply for, to help with carers support planning, learning opportunities, to offer peer support groups, to help seek professional counselling, to access respite and importantly, to give access to people who understand your situation.

The type of rights Miriam would like to see be implemented include more advocacy for carers.

“There have been times when I’ve really had to fight for my daughter’s right to diagnosis and care, as the medical professional couldn’t figure out what was wrong with her, I knew where to spotlight but they assumed I was an overanxious parent. I’ve been told to go home and Google Munchausen’s Syndrome! You need to know who you can trust to help you in those situations.”

For other carers who are in a situation where they feel overwhelmed, Miriam said she has already given advice to around 20 people in the last year that they need to go to Quarriers and have an assessment done. They have rights and Quarriers will help them understand what support they are entitled to.