“Hospice care is about living…… as a young adult”

The transition from childhood to adulthood can be an unsettling and anxious time for any young person and their parents.  The move from primary school to secondary education is a huge step, with greater challenges to face during adolescence.

Imagine then if you are a young adult living with a progressive illness, dealing with the usual issues of growing up but having to cope also with a move from children’s services into adult care?  An even bigger step to climb…..

Due to medical advances and treatment, people are living longer, and that includes young people who have complicated conditions.  From the age of 19, young adults can no longer routinely be treated in a children’s hospice and they must look to adult services for future support.

At St Elizabeth Hospice the transition is made easier through a team of staff and volunteers who run the young adult service.  From as early as 14 years of age, the team will work with the young person and the children’s hospice currently supporting them.  They start by getting to know them, helping prepare them and their family well in advance of the move.  The team will attend education, health and care plan review meetings and other transitional planning meetings to ensure the right care and support is provided. By the time the young person makes the transition they feel comfortable within their new environment having spent time with the doctors, nurses, staff and volunteers and familiarising themselves with the facilities and services.

There are two sides to the young adult service: the serious stuff that helps a young person and their family manage their condition and lead as normal a life as possible.  This service includes: help in managing symptoms, emotional support, use of short break unit facilities, support for siblings, parent peer support and therapy services including a fully equipped gym and complementary therapy.

Young adult service is unique however in that it recognises young people suffering from a progressive illness want to be treated like anyone else their age.  They are young adults first and foremost and they want to do what all young people do – have fun, be around likeminded people and most importantly have some independence.  This is where the fun stuff comes in!

Young adult service also incorporates a club called X-Change.  X-Change is a monthly young adult group that is socially orientated with fun and engaging activities.  People from as young as 14 years old who are still in children’s services are welcomed into the group to mix with the other young adults aged up to 35. X-Change is run by Danny Thorrington, transition & inclusion co-ordinator, who explains more about the service: “X-Change is an opportunity for young adults with life-limiting conditions to be themselves.  It’s like a youth club and whilst we are not strict in asking parents to leave, we don’t want them cramping their style!  These youngsters want their independence and we see a different side to them when they are without their parents.  They are more daring and outgoing.”

The name X-Change came about during a ‘tell us what you think’ night and the young adult were asked “what makes the young adult group so special?”  The same key words kept cropping up: friendship, experiences, ideas and interests.  Exchanging all these things was so important to the group – hence X-Change was born!

The group takes place on the first Tuesday of every month at St Elizabeth Hospice and runs from 4.30pm until 7.30pm; “although it usually runs on later because no-one wants to go home!” says Danny.  The evening includes: sporting activities in the gym including boccia, archery and polybat, creative activities such as clay moulding, painting and music, quizzes and games, the sensory room, complementary therapy, beauty therapy, a meal (usually a Chinese takeaway!), plus celebratory events.

Whilst X-Change is geared towards young adults gaining some independence, clinical care is provided if required and parents and siblings are cared for too.  Whilst family members are welcome to leave the hospice for some ‘time-out’ during group hours,  there are plenty of things to keep them occupied within the building: salon makeovers, relaxation therapies, peer support, speaker events covering a particular topic requested by the parents; but on special family nights everyone joins in the fun and games.  

Young adult service also hosts outings for young adults, their parents, siblings and carers to enjoy.   Facilitated by the team at St Elizabeth Hospice and supported by volunteers the trips have been a huge success; a picnic and inclusive rounders at Christchurch Park, a fish and chip supper in Felixstowe and a night out at Ipswich Speedway are just a few of the excursions so far.

Danny comments: “The purpose of young adult service and X-Change is to ensure inclusion wherever possible.  We see a wide spectrum of mental and physical abilities yet these young adults are no different to the rest of us.  They want to lead a normal life, they want to be the best they can be and they want to have a purpose.  Our aim is to provide enjoyment and stimulation and if that means we have to adapt an activity, task or piece of equipment to suit an individual’s needs, that is what we will do.”

Danny went on to add: “Young adult service is developing and we are learning all the time.  We are constantly thinking of ways to make things better for the young adults; we have ‘tell us what you think’ sessions with them and their families to see how we can improve our service.  A new offering that is proving beneficial in the transition from children’s services to adult care is our fortnightly integration session.  This is where young adults can socialise with day care patients at the hospice.  We get everyone involved in a fun activity and end the day with a cuppa and a large slice of homemade cake!  The response from our day care patients and the young adults has been fantastic; its good exercise and all ages enjoy socialising together.”

Due to popular demand X-Change also now offers a monthly Boccia club called X-Cel and they are now developing vocational opportunities for some of the young adults within the hospice who really aspire to giving something back.

Danny and the team have many ideas to improve the young adult service experience.  For example, they would like to develop their short break unit so the young adults can have ‘sleepovers’ with their friends away from home.  At the moment there is the facility at the hospice in place, but due to funding needs, the young adults currently have to bring their own carers to meet their needs during the stay.   

For now, Danny and the team continue to work hard at raising the profile of young adult service through other means.  On 19 October they will be at the Suffolk Skills Show at Trinity Park where they hope to encourage other young people to work as volunteers at the monthly X-Change group.  Danny says:  “X-Change is for the young adults – they don’t want older people like me organising them!  They want to chat with people of their own age about music and other stuff.  The more young people we can get involved, the better.  At the Suffolk Skills Show we will be demonstrating inclusive sports like Polybat and Table Cricket and we look forward to encouraging visitors to join in the fun.”

Left to right: Jake Edwards, Danny Thorrington and Josh Margereson

Jake Edwards is one of the young adults benefitting from the hospice’s young adult service. Here is his story…..

Jake was born with Cerebral Palsy, which affects body movement, muscle control, reflex, posture and balance.  He has also been diagnosed with Epilepsy and a hormone deficiency condition called MPHD.  This complex diagnosis means that Jake has difficulties with mobility and is wheelchair-reliant; his speech can also be affected, making it hard sometimes for him to express himself.  

Two years ago Jake Edwards became too old to attend the local children’s hospice and he faced the daunting prospect of adult care.  Luckily for Jake he lived in the Ipswich area and took advantage of the Young Adult Service offered by St Elizabeth Hospice.

When asked about the Young Adult Service, Jake said:  “It helps children aged over 14 to get familiar with the adult hospice – the staff, carers and the building – so when the time comes they feel comfortable about attending.  It worked for me; I wasn’t nervous when I first came and it’s a nice place to be.  The best thing is the X-Change group, which is run every month; it’s a social group where young adults with all different disabilities and illnesses come together to have fun.  At special times, if we go bowling or have a party we can bring our families, but normally it’s just us, staff and volunteers who meet up.  We do lots of activities and sports like Boccia, polybat or wheelchair football and we eat here too – the food is really good!”

Jake is now 18 years old and like so many people of his age he loves being active, spending time with his friends and on social media.  He values his independency and has recently left home to ‘flat-share’ in a supported environment in the heart of Ipswich.  He visits the hospice every two weeks for medical appointments, physiotherapy treatments and occupational therapy that focuses on maintaining independence and quality of life.  In more recent months Jake’s trips to the hospice have become more frequent after he volunteered to become a Young Adult Champion.  Jake explains:  “As a Young Adult Champion I’m someone who represents St Elizabeth Hospice and tells people about the Young Adult Service.  I’ve been asked to talk at a Transitional Care Conference and I also support new young adults when they come to the hospice for the first time.  I put myself forward to do this work because I care about the hospice – it’s a safe and caring place and they have helped me to become more independent.  I feel like I’m returning the favour – the hospice has helped me and now I’m helping them back.”

Jake, who admits to being a confident and sociable young man, says he has more to give:  “My ambition is to become a Fundraising Volunteer for the hospice, with the money I raise going towards facilities that make patients feel better and more independent.  Top of my list is to install a hot tub and some computers!  As a Volunteer it will also look good on my CV for the future!”  

With Jake’s sense of humour, determination and positive outlook on life, who knows what he will go on to achieve?  Suffice to say, watch this space!

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