At the start of children’s hospice week, Liz Rundle takes a look at 24 hours in the life of Ty Hafan

PEOPLE who visit Ty Hafan always comment on the peace, tranquillity, brightness and inspiration the hospice exudes.

But those on the inside know that to achieve this environment – and the highest level of care – a huge amount of work, dedication and professionalism goes on, just as much outside of the building than inside.

I’ve worked for Ty Hafan for 10 years as its PR manager and for the last three years, I’ve been based at the hospice itself, in Sully, Vale of Glamorgan. I’ve learned first-hand about the commitment to providing specialist palliative care to life-limited children, young people and their families who live in all parts of South and West Wales.

I have many amazing memories of my time so far at Ty Hafan; the sight of a mum with her feet up on a sofa reading a book. When was the last time she had been able to do that?

A young lady watching fireworks at a display at the hospice totally enthralled and imitating the falling showers of light with her hands and fingers.

Seeing a mum and dad having breakfast together after having been out the previous evening to the cinema – for the first time since their child was born – a child who is now six.

Having a Christmas Eve Quality Street delivered by a remote-controlled Jeep to my office followed by a young man in his wheelchair with the most wonderful smile on his face.

A carer and profoundly disabled teenager having tremendous fun squirting paint from a syringe over a large piece of paper in the art room. I still have that amazing piece of art on my wall.

Seeing the look of amazement and joy on the face of a little girl when she realised that by pressing a button on a remote control she activated a foodmixer being held by the chef during a cookery club session.

A teenage boy getting to his feet to join in with a pantomime performance at the hospice, with his mother trying to make sure his oxygen line remained intact and connected without affecting his enjoyment

Meeting a family in reception as they arrive for a weekend stay. Seeing mum put down her bags and hearing her sigh with relief. “At last,” she says, “We’re here – I can’t tell you how much I have been looking forward to this.”

I’ve shadowed some of my colleagues on the day and night shifts to find out what goes on around the clock at this very special place.

And my final memory comes from my shadow night shift, and saw me brushing out the beautiful long red hair of a 16-year-old girl, who should have been able to stand in front of the mirror taking pleasure in doing it herself, just like any other teenager.

The day shift care team arrives and is briefed by the night team about how each child or young person has fared throughout the night. Staff allocation is made for the day – at least one member of staff for each child, sometimes two. Gastrostomy feeds, medication and activity times are confirmed.

The children begin to wake up. Some will have gentle chest physiotherapy and stretches to help clear airways and loosen limbs before being bathed and dressed for the day. This can sometimes take a while.

Housekeeper Carole Jenkins arrives to ensure the hospice is ready for the day. The first load of bed linen and towels go into the wash from the night time.

Children and carers start to arrive for breakfast, often giving their parents a bit of a lie-in if they are staying in the family accommodation upstairs. Real luxury for them.

Hayley Mason, from the family support team, sets off from home in Merthyr Tydfil for the long drive to West Wales to see a family to discuss end-of-life planning for their daughter.

Linda Bishop, the palliative care nurse, leaves for an assessment visit to a family in Newport as a result of their child being referred to Ty Hafan.

Sam Smart, a member of the family support team, arrives at the hospice to start producing the 100 orders of service, which are needed for a child’s funeral in a few days’ time.

The day’s activities begin in the hospice. The younger children go to the art room for an art and craft session, which could entail syringe painting or wheelchair art. Any teenagers staying can sometimes be late risers although one, who loves music, starts a session with music therapist Diane Wilkinson. He’s encouraged to join in on other instruments as Diane accompanies him on the flute or piano.

Play practitioner Kirsty Clark sets up a Touch Trust session – a unique creative movement programme for children with complex needs. Kirsty creates a comfy but stimulating environment with huge bean bags, fibre optics, a star projector and music.

Tracy Jones and another colleague from the family support team leave for the neonatal unit in the local hospital to deal with an emergency referral of a baby just a few hours old.

Sibling support worker Lynne Doyle returns from a meeting in a school to liaise with teachers about supporting the brother of a child who is nearing the end of his life.

Lunchtime for all children, young people, families and staff in the dining room. This and the adjoining lounge area is the hub of the hospice.

Tracy Hill, from family support, leaves to drive to Ebbw Vale to visit a family whose child has recently come out of hospital after becoming very ill with a chest infection. This condition is easily overcome in a healthy child or adult but can often mean life or death to a child with a life-limiting condition. The family are finding it hard to cope emotionally.

The care team start preparations to take some of the children to the beach. This can take a considerable amount of time to plan and ensure all necessary feed, medication and care notes are assembled to accompany the trip in case of an emergency diversion to the local hospital.

Complementary therapist Angela Tucker starts a massage and reflexology session with a resident mother who is having trouble sleeping. This is beginning to impact on her general health.

It is essential mums and dads remain able to provide the care their life-limited child needs.

The beach trip gets under way, complete with at least one carer per child.

Some children may be too tired to go so they stay behind for an afternoon nap.

A nurse, not included in the trip, carries out an admission for a child and family staying for the first time. This can take up to two hours to make sure all information is gathered on the child’s condition, medication and care needs.

A call comes in to the care team from Tracy Jones who has gone out on the emergency referral of the newborn baby, asking that rooms be prepared to admit the family later.

The beach party return tired but happy and get ready for teatime. Again an event for all to enjoy together.

Bath time and getting the younger children ready for bed followed by quiet time. Care diary and documentation is updated in readiness for handover to the night shift team.

Ongoing half hourly checks proceed throughout the night on all children and young people staying at the hospice.

Medication and feed checks are also ongoing throughout the night.

The baby and his family arrive from the hospital neonatal unit. The care and family support teams work together to settle them in and provide holistic support for all members of the family.

Hayley Mason returns home from West Wales having received a call to visit another family in that area who have been fast approaching yet another crisis point in dealing with the complex needs of their child.

The night shift arrives and is briefed on how each child or young person has fared throughout the day and any issues which need attention.

The family support members dealing with the neonatal admission go home but will stay on call in case the situation changes.

Meanwhile, the teenagers are chilling out in the den, playing video games or watching DVDs. Having forgone tea, a takeaway is ordered to help celebrate a birthday.

First attempt to get teenagers to bed. The birthday boy asks for a sleepover with a resident mate in his room. Furniture is moved to accommodate this.

The monitoring system in the nurses’ station picks up that a child is awake. Two care team members are quickly there to help the little girl manage a seizure.

The care team has a welcome cup of tea during a rare quiet time.

Now is the time for catching up on paperwork and recording any pertinent issues from the evening on each child’s daily record. This can also be another busy time for medication and several children need regular turning and repositioning through the night.

A parent staying for the first time comes down to the care wing, not used to having an uninterrupted night’s sleep. A nurse makes her a cup of tea while assuring her that her child is having the best of care and giving her the space and time to share her fears of what the future holds.

Another child wakes; his allocated carer is quickly on the scene to provide reassurance and to attend to his needs.

The recently admitted newborn baby begins to deteriorate – the family support worker on call is called back in to support the family and staff caring for the baby.

A young child wakes early; her carer occupies her by reading a story until it is time to get up.

An early-rising parent goes down to the dining room for an early breakfast.

The day shift arrives and day begins at Ty Hafan.