Ty Hafan

“Beth is my beautiful princess, so I just want her to be happy”

Beth

Mum Karen Parry from Cwmbran is a full-time carer for her daughter Beth, who has a rare life-limiting condition.

The family have been supported by children’s hospice Tŷ Hafan throughout Beth’s childhood, with short break care and a range of support services and therapies that have helped the family cope with the demands of 24/7 care.

But when Beth turned 18 this month, her care transitioned from child services to adult services, meaning they will no longer be supported by the same medical and care professionals they have known for years.

Now Tŷ Hafan has launched a new project to help Beth and other young people like her who are transitioning into adult care.

Karen’s story:

“Beth has been coming to Tŷ Hafan since she was nearly four. Walking through the doors for the first time I thought ‘What’s going to happen to her?”.

“My mum said she thought we were sending her to Tŷ Hafan to die, but when she saw the place afterwards she knew it wasn’t like that; it’s friendly and relaxed.

“On our first visit, a family we knew were staying there at the same time, so that made it a bit easier that we had friends there to talk to.

“Beth has had music therapy, play sessions, massage, she’s been in the hydrotherapy pool – we can see she enjoys it because she’s got a little smile on her face.

“It’s nice to come down there for short breaks, have food cooked for us and just relax, have a good night’s sleep and have a break from doing all the medications because Beth needs 24/7 care. And I can spend time with my son Sam – going to the beach, shopping in Cardiff or going to the pictures.

“We’ve known some of the staff at Tŷ Hafan for so long now that we class them as friends.

“Every day I have to give Beth three lots of epileptic drugs, antibiotics, use the suction machine if she has an epileptic fit or even when I brush her teeth. If anyone had told me before I had her that I would be here making up medications, I would never have believed it. When she was a tiny baby I used to worry so much about all these strong medications I had to give her – what if I gave her too much? And I had to keep them high up out of the way so her little brother Sam couldn’t reach them.

“We have two community carers come in every week and it takes two of them to bath her and look after her. But when they’re not here it’s just me. It can get lonely sometimes. But the support I’ve had from Tŷ Hafan has been great. They do such a good job and they’ve got her best interests.

“Beth celebrated her 18th birthday at the beginning of this month – and we spent it at Tŷ Hafan. It was our last visit before she transitioned from child services to adult services.

“It’s a worry. We will lose our community nurses and Tŷ Hafan. It was really strange seeing the staff we’ve known all these years for the last time. They’ve known Beth since she was a baby and we’ve built up that bond of trust. We’re going to miss all that. All her doctors will change too and I’ll have to start building up relationships all over again.

“Tŷ Hafan’s transition coordinator is helping us through the process. It’s good having her there to ask questions that I wouldn’t know to ask. She’s even come with us to look at colleges and places for respite care. It’s hard choosing these things because it’s not my life; it’s Beth’s life and I just want to do what’s best for her.

“Beth wasn’t diagnosed until she was 16. She has a condition called STXVP1. When I looked it up on the internet there was just a lot of technical information I couldn’t understand, no support groups or other families. With her diagnosis everything is still the same – they still can’t say what her prognosis is, how long she is going to live, and she still needs the same amount of care.

“Beth is my beautiful princess, so I’m just hoping we can still get the same care that we’ve always had and that Beth is happy.”

Sarah Slye, Transition Coordinator at Tŷ Hafan, explains the Transition project::

“My role as Transition Coordinator is to support, advocate and signpost children and young people transitioning from children service to adult services in South East Wales. Transition age is 14-25 years.

“The Stepping Out Project is aimed at engaging young people and their families to identify progression routes post-18 that ensure social, emotional and physical needs are met. Health, education and housing are all elements to consider during transition planning. The role will identify and build on relationships with services providing care and support for young people and adults with palliative care needs or life limiting conditions. The project is to develop skill-based group workshops for young people and their families to allow the guidance, knowledge and independence to achieve a positive experience

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“The transition pilot project will launch in Cardiff and the Vale this June and I strongly encourage young people aged 14-25 years from across local health boards to engage and participate in the project. The sessions and workshops will involve partnership working to develop a toolkit that provides a checklist for a holistic approach for families and professionals. There will be workshops designed around a medical and social model of care looking at young people, their rights and having a voice as well as healthy relationships.

“Through this transition project, Tŷ Hafan aims to enable young people to live their lives as independently as possible, according to their wishes, whilst receiving the care and support they and their families need. We’re building barriers and strengthening bridges between adult and children services, acknowledging the importance of decision-making and confidence building for these young people who need support.”

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