Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Gully’s Place Trust Fund is supported by Poole Hospital Charity – registered number 1058808

Foreword

Throughout Dorset there are around 400 infants, children and young people with a life-limiting or

life-threatening illness.

These children can have a short life expectancy and may not survive to adulthood. They may need palliative care for weeks, months or years before they approach the end of their life.

Gully’s Place Trust Fund has been developed to support these children and their families, from diagnosis to death and beyond. This support is offered by a team of experts, wherever and whenever it is needed.

The fund is registered under Poole Hospital Charity and the committee members, who range from professionals in paediatric health, parents and community supporters, have the necessary skills and experience to help the fund achieve its goals.

Gully’s Place Trust Fund is made up of three separate areas of work – a physical Gully’s Place Suite located on the children’s unit at Poole Hospital, parents’ support groups and education and learning materials, for staff and families.

The concept of the Gully’s Place Trust Fund is unique within acute trusts, and as far as we are aware, it is the first of its kind nationally.

Page 2 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Place was not just a physical suite, but an ethos, that could be provided to families in need wherever and whenever they needed it?

Could the team provide the same level of support in the community as they did in the hospital? It fitted with what parents were asking for, and was in line with the national guidance ‘Together for Short Lives’ and ‘Better Care, Better Lives’, which states that families should be able to choose where their child receives palliative care and where they should die – at home, in hospital or in a hospice.

In 2011, the NHS team across Dorset made a successful bid to the Department of Health for a grant to improve children’s palliative care and provide a two-day learning event for professionals – Piecing it Together Family Feedback.

This work identified the need for two additional core areas of work – providing care beyond the death of a child in the form of a parents’ support group, and ongoing training and education for staff dealing with bereaved families, and for families themselves.

The three strands of the trust became clear – Gully’s Place Suite, the parents’ support groups and ongoing education and training for staff.

Gully’s Place Trust Fund – a short history

In 2009, the team working on the children’s unit at Poole Hospital were approached by local dance teacher Diane

Gulliford (Gully), who wanted to make a significant charitable donation to hospital services. Gully asked the team to identify how the money would be best spent.

The team had long known that children with life-threatening and life-limiting illnesses and their families really needed a private, comfortable and calm environment, away from the main children’s unit, with access to professional support as needed.

After much work with staff, partner organisations, parents and families, Gully’s Place Suite at Poole Hospital was opened in 2010. The suite is primarily used for families

requiring palliative or end-of-life care, but it is also used for transitional care, in case of sudden death

and for children with severe autism.

For those in need, Gully’s Place became a much relied on support

system. The Collins family were the first to use the suite. They said: “It gave us the confidence to care for our son while knowing there was help at the touch of a button.

“It also gave our ‘home carers’ time to get to know him with the added back up, if they

needed it. It provides the perfect transition from hospital to home.”

After the suite had been open a while, an idea was born – what if Gully’s

Throughout Dorset there are around 400 infants, children and

young people with a life-limiting or life-threatening illness.

Page 3 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Our mission is simple – to provide care and support from diagnosis to death, in hospital, at home and beyond.

Our vision for the future sees us working to develop children and young people’s palliative care services across Dorset, to provide choices for families receiving end-of-life care and supporting them beyond treatment.

Gully’s Place Trust Fund – our vision, our mission

Gully’s Place Trust Fund committee

Gully’s Place Trust Fund committee

The committee was established in 2012 when the team recognised that there was much more that

could be done to improve palliative care across Dorset under the Gully’s Place umbrella, such as providing more equipment, more support for families and more training for staff.

The committee, which incorporates health professionals, community supporters and service users from across Dorset, aims to ensure that donations are spent appropriately and as intended and that the generosity of benefactors is appropriately recognised and publicised.

How will funds raised be used?

To maintain the management of Gully’s Place Suite in Poole

To support the development of a Gully’s Place Suite within children’s services in Dorset County Hospital NHS Foundation Trust, Dorchester

To provide specialist equipment needed to support families and deliver palliative and end-of-life care in Gully’s Place Suite Poole, and within the setting of families’ choice

To provide educational materials to support families, such as funeral options, registering the death and teaching and support for complex procedures parents may have to carry out to care for their child

To provide training to enhance learning and skills in delivering care for palliative children/young people and their families

To continue to support the parents’ support group

Page 4 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

One of the most difficult things a parent faces being told is that their child is likely to die before they will.

Palliative care for children starts at diagnosis, and is about making experiences for children and young people who are diagnosed with life-limiting and life-threatening conditions better.

The range of illnesses, many of which rare, and symptoms, many of which are common, makes it hard to define and predict care needs.

These conditions can broadly be defined into four categories, ranging from life-threatening conditions which may be cured to terminal illness, or non-progressive conditions which cause severe disability.

For many parents, looking after a child with a complex or rare health condition is a life-long responsibility. Their children will often not grow up and leave home as other children do, and their child’s requirement for complex care and support will not reduce over time as the child grows older - for many it increases.

Children’s palliative care – an introduction

As they become bigger, heavier, stronger or more challenging, parents and carers themselves become less physically able to manage. Families that face such huge responsibilities need to be recognised and supported.

At this time, families want care delivered by skilled professionals, from diagnosis to death and beyond. They want a skilled team that walks the journey with them.

Gully’s Place Trust Fund aims to offer that support for children and their families across Dorset, in hospital and at home. It aims to compliment care already offered by children’s hospices, empowering families to make informed decisions, and giving them choices.

At this time, families want care delivered by skilled professionals,

from diagnosis to death and beyond. They want a skilled team that walks the journey with them.

Page 5 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Gully’s Place Suite is a purpose-designed space, located at the far end of the children’s unit in Poole Hospital.

It has one bedroom with en-suite facilities, a spacious lounge area with TV and private tea and coffee making facilities, and a separate bedroom with pull-out sofas for family and extended family to use.

The aim of the suite is to provide privacy and dignity for our patients and their families, and it is used in the following situations:

Gully’s Place Suite – a model of care

For patients requiring palliative and end-of-life care

For a child/young person and their family who decide to remain in hospital during the terminal stages of illness

For a child/young person and their family who do not have time to go home as death is imminent

In cases where there has been a sudden death of a child or young person in the community, in the emergency department or on the children’s unit, the child is brought to Gully’s Place. This provides a comfortable and appropriate environment for the family to be with their child and provide privacy in coroner’s cases, where police interviews may be necessary

As a transition to home area for children with complex health needs

To provide a quiet and relaxed environment for children with severe autism, who can become very anxious in hospital

As a private space for staff to use when breaking bad news to families, where families can take the time they need to absorb the news and explore options

Alongside specialist end-of-life care, provision is made for families to make and retain memories, photos of their child, locks of hair and memory boxes.

This is the model that we are aiming to develop in Dorset County Hospital Foundation Trust so we can achieve our goal of embracing all palliative children and young people across Dorset.

Page 6 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Following feedback from the Piecing it Together Project, a parents’ support group was established in 2011.

Previously, bereavement support was limited to diagnosis and was often provided out of the county, which didn’t embrace sudden and accidental deaths.

Parents told us they wanted opportunities to meet other parents whose children had died – they told us that no-one can understand a bereaved parent like another bereaved parent.

They wanted a proactive group, where feedback about their journeys made a difference and contributed to improving experiences for other families in similar situations. They wanted ownership of the group, supported by professionals.

We wanted to provide a safe, nurturing, confidential and non-judgemental environment for individuals to share and explore their experiences, and so we launched the bereaved parents’ support group.

Gully’s Place parents’ support group

The group meets at AFC Bournemouth and is open to any bereaved parents living in Dorset regardless of the cause of death of a child/young person under 25 years of age.

The parents meet once every three months to share experiences of their loss, facilitated by NHS paediatric professionals across Dorset who have skills in palliative and bereavement care.

Parents are supported in this group while they process the impact of their loss and move forward into the future.

In 2012, in the approach to our first Christmas, we held a remembrance service hosted at AFC Bournemouth at the request of parents. This will now be an annual event

We also host a private Gully’s Place parents’ support Facebook group offering parents a chance to chat and support one another between meetings. The page offers a host of useful resources and contributions from parents.

Fathers’ bereavement support group

We now have an established fathers’ support group which is activity based with things ‘blokes like to do’. Dads aim to meet twice a year.

Mums’ social support group

Due to popular demand we are developing a mums’ social group which will aim to meet twice a year.

How we’d like to develop the support groups in the future…

Embrace grandparents, who are often the forgotten mourners

Provide specialist workshops around coping, managing siblings and enabling a family to move forward

Page 7 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Gully’s Place – education and learning materials

Breaking bad news skills

Advanced communication skills

Advanced care planning and management of deterioration within the family

Pain and symptom management

Spiritual and cultural issues in end of life care

Funeral planning and options

Organ donation

Working with siblings

Staff bereavement support

Sudden and planned deaths: legal requirements, post mortems, what happens next

End-of-life care at home

End-of-life care in Gully’s Place Suites

Children’s hospices service provision

Discharge planning for the palliative child and family

The parents’ support group also provides a forum for parents to contribute to the development of Gully’s Place palliative and end-of-life services and professionals’ learning.

By engaging with bereaved families we have been able

to identify gaps in our service, and by engaging with staff we know the importance of supporting professionals’ learning.

By engaging with bereaved families we have been able to identify gaps in our service, and by engaging with

staff we know the importance of supporting professionals’ learning, in order to enhance children’s palliative and end-of-life care across Dorset.

This strand of Gully’s Place aims to provide continuous learning opportunities for professionals, covering key areas, including:

Page 8 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

The Collins family

“We were very lucky to be the first family to use Gully’s Place, and we were so grateful to have had that opportunity. It gave us the confidence to care for our son whilst knowing there was help at the touch of a button.

“It also gave our ‘home carers’ time to get to know him with the added back up if they needed it. They could ask questions and get advice from the nurses rather than going into the job cold.

“You all became part of our extended family as we lived there for such a long time, you made what was such a difficult time more bearable and helped us to laugh when we felt we couldn’t.

“You have helped us gather up our pieces of broken dreams, put them back together and helped us on our way, from the early stages of this journey with our son to the latter part without him. So please carry on what you all do, for families and children like Will.

“You all profoundly touched the lives of people you otherwise call strangers. We all can’t thank you enough.”

The difference a trust like Gully’s Place can make to families…

You have helped us gather up our pieces of broken dreams,

put them back together and helped us on our way, from the early stages of this journey with him to the latter part without him. The Collins family

The Churchill Family

Our lives changed so quickly. Without Gully’s

Place we would not have had the confidence to go home.

Page 9 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Karen Fernley, sister, children’s unit

“Before we had Gully’s Place, when a child died in the emergency department, the family often had to stay in the department enclosed in a very small room with little opportunity for privacy or peace and quiet.

“If we did bring the child up to the ward, it was a case of searching around to try and make an area as hospitable as possible. The rooms, however, are typically clinical and provided a rather harsh environment for the families. Often there would not be enough room for the families to be together, and they would be standing around in the corridors with little privacy.

“In the event of a sudden, unexpected death where the police may have to be involved, discussions were often in offices away from their child which could be very distressing for the families.

The difference a trust like Gully’s Place can make to staff…

“Since the development of Gully’s Place, our whole approach to how we care for children and families at this time has changed. We always have a dedicated private, calm, caring environment ready at all times. Whether a planned or unexpected death, I now feel reassured that I will not be searching around and trying to ‘make do’ but instead have an environment that is there whenever it is needed.

“As a professional, Gully’s Place has given me the confidence and reassurance that we are providing the best possible environment and choice for care in end-of-life situations.

“For transition to home care Gully’s has been a godsend, enabling parents and families to practice often complex care but with the reassurance of the staff being nearby. They also have the opportunity to live together as an extended family and together find out what works well, or not, before going home.”

I now feel reassured that I will not be searching around and trying to

‘make do’ but instead have an environment that is there whenever it is needed.

Page 10 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Helen Parker, sister, children’s community nurses

“Many of our families have benefited by using Gully’s Place as an arena for gaining confidence in what is often

complex care for their child before going home.

“From a community nursing point of view, this has been invaluable as we have been able to identify and strengthen gaps in parents’ confidence earlier, and in a safe environment.

“In regards to planned end-of-life care, we can now offer our families a choice – either home or Gully’s Place.

“Nursing children in the approach to end-of-life in Gully’s Place Suite means you can dedicate all your care and attention to the family at their pace, for as long as they need it.

“This can be done without the usual interruptions and demands you would get if you were nursing

the child and family on a busy children’s ward, which sometimes used to leave me feeling like I hadn’t given

the family the time they needed.

“Gully’s Place is worth its weight in gold and I would encourage other children’s units to adopt this model of care.”

Kate Pigott, staff nurse, children’s unit

“Gully’s Place Suite is a very versatile and useful area of the ward for both families and staff that allows space and privacy.

“That may be through enabling families to gain confidence in coping at home when their child has a prolonged hospital stay, as a safe comfortable place for palliative care or a private area away from the bustle of the ward where grieving parents can be with their child.

“I would not like to go back to nursing children and their families without an area like Gully’s Place Suite being available.”

Gully’s Place is worth its weight in gold and I would encourage

other children’s units to adopt this model of care.

The difference a trust like Gully’s Place can make to staff…

Page 11 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Detective Sergeant Andy Bell, Dorset police

“Gully’s Place Suite provides a private space for a family to be together when they’re going through such a devastating time. “This environment means families can remain with their loved ones, and we can be as unobtrusive as possible, remaining sensitive to their needs while working with them during such a difficult time.

“Having dealt with similar incidents in other hospitals, it highlights what a fantastic resource it is and how lucky we are to be able to utilise it.”

Detective Sergeant Mark Fursman, Dorset police

“This facility is totally set-up to ensure the family have privacy and allow professionals to do their job, keeping the intrusion down to a minimum. Other hospitals should look towards adopting this facility.”

This environment means families can remain with their loved ones, and we

can be as unobtrusive as possible, remaining sensitive to their needs while working with them during such a difficult time.

The difference a trust like Gully’s Place can make to other professionals…

Page 12 Supporting children’s palliative care across Dorset from diagnosis to death, in hospital, at home and beyond

Contact details For further information on how you can help:

Telephone:

01202 448449Email:

fundraising@poole.nhs.uk

Website: www.poole.nhs.uk/fundraising

Visit: Poole Hospital Charity office

Main reception corridor Poole Hospital, Longfleet Road,

Poole, Dorset BH15 2JB

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