Hertfordshire
children 1
Welcome from Fergus McMullen Appeal Chairman
Sadly, some children suffer a serious illness from which they will not recover. When this happens the type of support they need is known as ‘palliative’ care. Keech Hospice Care is a charity and the NHS commissioned provider of children’s palliative care for Hertfordshire. They offer many different services to address the physical, social, psychological, emotional and spiritual needs of children and families affected by life-limiting conditions. In Hertfordshire, the charity offers a range of specialist paediatric support 24 hours a day, 365 days of the year.
As many children are too ill to travel, Keech plans to take the full children’s hospice service to them. With our help, together we will expand the existing community nursing services into a full Children’s Hospice at Home service across Hertfordshire. In this book you will meet some amazing people. Doctors, nurses, therapists, social workers, and of course the children and their parents. They are brave, resilient, extraordinarily hard-working, funny, philosophical folk. I am committed to helping them, and this book is my invitation to you. Please join our team and help them too.
Currently, 150 Hertfordshire children are cared for by Keech, but many more need help. There are estimated to be over 900 life-limited children in our county, 400 of whom need hospice help in any one year. Therefore, it is imperative we grow our high quality palliative services. 2
Contents About Keech Hospice Care 4 With your help 6 Pain is what scared us the most 8 The part Keech plays 12 400 Hertfordshire children
We have a plan 16 This is the plan 17 Facts and figures: Stage 1 - Access to specialist Palliative Care 20 Stage 2 - Keech Community Hubs 21 Stage 3 - Palliative Care Register 22 Summary of Hertfordshire Service Proposals 23 We need to raise ÂŁ1.5m - The BraveHerts Appeal
A day in the life of 26 Children’s Hospice at Home Nurse 29 1 in 3 children 30 Notes 3
With your help we can reach every seriously ill child in Hertfordshire 4
“Pain is what scared us the most� Our parents tell us that their child being in pain is what they are most afraid of. We know that freedom from pain allows the highest quality of life possible for as long as possible. We have a great deal of experience in pain relief and always manage the total pain - emotional, psychological, physical and spiritual. 6
Oliver’s parents... “During the awful months of chemotherapy when Oliver was getting sick we were referred to Keech for help. Now we have the true Oliver back. As a family, we have gone through a unique and terrifying experience and our little boy has missed a year of his life, but with the charity’s help our family is adjusting back to a normal, happy life.”
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Oliver, Age 4, and family, St Albans
The part Keech plays Keech has a full specialist team who work collaboratively to provide care for each child and their family. Keech is a key coordinator within the team which is built around each child. We work closely with many other clinical professionals, family, friends, other charities and many more organisations to deliver the very best care and help manage the complex needs our children have.
Music/Art therapists
Complementary therapists
Bereavement support
Community nurses 8
Paediatricians
Doctors and Nurses
Social workers
Play Specialists
You?
What part could you play?
Ruby, Age 2
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Sensory room
Play Specialist
Tots and Toys group
Teenage room
400 Hertfordshire children Research tells us that each year, there are at least 400 children in Hertfordshire who need our help. Currently, we only have capacity to care for 150 children but our caseload is 174 (marked in blue). The remaining grey faces on the map represent the children who are not receiving hospice care.
REDBOURN TRING
HEMEL HEMPSTEA
Key: Children we care for
ABBOTTS LANGLEY Children who need our help
RICKMANSWORTH 12
ROYSTON
BALDOCK
LETCHWORTH
HITCHIN BISHOP’S STORFORD BISHOP’S STORTFORD STEVENAGE WARE
HERTFORDSHIRE
KNEBWORTH HERTFORD WHEATHAMPSTEAD SAWBRIDGEWORTH
HARPENDEN WELWYN GARDEN CITY
BROXBOURNE BROXBOURNE HODDESDON
ST ALBANS
HATFIELD
AD
POTTERS BAR
WALTHAM CROSS
RADLETT WATFORD
BOREHAMWOOD BUSHEY 13
Families have access to our consultant paediatrician 14
We have a plan
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This is the plan... 1. Develop access to Specialist Palliative Care in Hertfordshire
Reach the 400 children who need us
2. Provide Community Hubs in Hertfordshire
and Co-ordinate their care effectively with other providers
3. Create Children’s Palliative Care Coordination Register
days a week. To deliver on our ambition to help every seriously ill child, we need to expand our existing community service to a full specialist team who can respond to all the family’s needs at any time of the day or night.
We need to further develop specialist children’s palliative care across Hertfordshire. We need to provide a sustainable and cost effective Children’s Hospice at Home service that is capable of providing a full range of services including end of life and bereavement care, seven 16
Facts and figures Stage 1 - Access to Specialist Palliative Care The National Palliative Care Review (2007) and feedback from our families tells us that they need access to a team of experts in all aspects of their care, 24 hours a day.
with the back-up of a consultant doctor 24/7. The service would be underpinned by a 24 hour telephone helpline. This helpline would also be available to other more general doctors, nurses and social workers who might need our expertise and advice. The phone line would be answered by a specialist nurse and be a single point of contact, night and day. This service would not only offer advice and support, but would be used to book home visits when necessary and signpost to other services where issues cannot be immediately resolved. This telephone helpline would be a valuable lifeline to families when all other services are closed.
Families want support with: making the right decisions for their child knowing how to care for their child as their situation declines good pain and symptom management support for the whole family which often includes distressed siblings allowing their child to die at home expert specialist support that will make this wish more likely
Our plan is to start in year one by recruiting the key members of the full specialist team. By years two and three we would add in all the component roles. Subsequently, the funding needed for this part of the service increases each year as more roles are filled. We want to attract the best calibre of staff for this service, which offers a unique and innovative employment opportunity. The initial work needs to be led and managed to ensure we communicate and work closely with all other services in Hertfordshire. To this end a Project Lead will be recruited in the first year. Costs for this post will convert to the recruitment of a Manager for subsequent years.
To deliver this ambition we need to expand our existing children’s community nursing service into a full Children’s Hospice at Home specialist team. Currently, we are only able to provide for a limited number of children. The specialist Children’s Hospice at Home service would take the form of a full mobile team of clinical nurse specialists, palliative nurses/assistant practitioners, supported by a range of other professional therapists 17
Stage 1 - Total team will consist of:
Project Lead
5 x Community Nurse Specialists
4 x Assistant Practitioners/Nurses
Music Therapist
Art Therapist
Admin Support
Complementary Therapist
Educational Support
Occupational Therapist 18
Medical Consultant
Health Care Assistant
Social Worker
Clinical Psychologist
Play Specialist
Physiotherapist
Stage 1 - Financial breakdown by year:
= Staff Costs £209,525
Non-Pay £52,760
Year One Total:
Support/Infrastructure Costs £60,326
£322,611
= Staff Costs £360,195
Non-Pay £64,910
Year Two Total:
Support/Infrastructure Costs £97,774
£522,879
= Staff Costs £470,067
Non-Pay £92,819
Support/Infrastructure Costs £129,464 19
Year Three Total: £692,350
Stage 2 - Keech Community Hubs Day support and therapies Hertfordshire children and their families need access to emotional and psychological support through a range of therapies that augment their medical and nursing care. This is best delivered in Keech community hubs; physical buildings equipped with
consulting rooms and therapy suites. A community hub would be established on each side of the county to ensure local access to all services. These could be existing facilities shared with others (e.g. adult hospices or statutory services) or new build (requiring additional building costs).
Using existing facilities, the cost per hub would be:
Staff Costs: £194,573
Non-Pay: £56,164
Support/Infrastructure costs: £57,669
Rent:
Year one total: £348,406
£40,000
Year two total:
£
Year three total:
£
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,
Stage 3 - Palliative Care Register My Care Co-ordination for Children There is currently no formal co-ordination of care across professional boundaries for children with life-limiting conditions. Health and Social Care work together for the protection of children and vulnerable adults, but generally professionals still work in silos addressing their immediate needs. At Keech we provide a service for our adult hospice patients – My Care Co-ordination, which we would like to mirror for our child patients. It is essentially an electronic register managed by a co-ordination team to support families in finding their way through the system; increasing their care packages as needs require; and keeping a register of families to ensure we know who may need us and proactively offer support.
Staff Costs £63,428
The development of this model for palliative children addresses a need identified both locally and nationally in research by the charity Together for Short Lives. It would be the first of its kind not only in Hertfordshire, but across the enitre country.
Non-Pay £5,870 Support and Infrastructure Costs £5,870
Year one total: £75,168
Year two total:
£
Year three total:
£
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,
Summary of Hertfordshire Service Proposals: Providing access to specialist palliative care in Hertfordshire:
= Year 1
£322,611
Year 2
Year 3
Total:
£692,350
£522,879
£1,537.840
Providing a community hub in Hertfordshire. (These costs are for one hub, however, two hubs would be required):
= Year 1
£348,406
Year 2
Year 3
£328,928
Total:
£340,700
£1,018.034
Developing a Children’s Palliative Care Register and providing Children’s Care Co-ordination across Hertfordshire:
= Year 1
£75,168
Year 3
Year 2
£172,724
£188,234 22
Total:
£436,126
We need to raise £1.5m to make Stage 1 a reality If we don’t do this no-one else will. The BraveHerts Appeal Keech Hospice Care is uniquely qualified to make this happen. They already provide much of this care to over 150 children in Hertfordshire, year on year. The charity has all the expertise, connections, links with local hospitals and their own consultants to make this difference. To raise the £1.5m needed over the first three years, Keech has created the BraveHerts Appeal. If you can help me contribute to this Appeal, you could be part of the team that creates something truly historic. Through your efforts and influence you can help make this happen. Together we can create a team around each seriously ill child and their family who need us in Hertfordshire. There are a number of ways you can help. Please get in touch.
Fergus McMullen fjmcmullen@mcmullens.co.uk 23
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A day in the life of
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A day in the life of a Children’s Hospice at Home Nurse Lisa Iaciofano is a children’s nurse and has been with Keech for two years. Lisa arrives at the hospice bright and early to prepare for her morning visits. She enjoys her work, helping lifelimited children, and wants to devote as much time as possible to supporting the families on her caseload. At 9.00am she’s on the road for her first call. She’s visiting a little girl, Jessica, who was recently diagnosed with a tumour on her brain stem. The family are just coming to terms with this: the toddler had been perfectly healthy until the age of two, but now faces years of chemotherapy. They’re in shock from this devastating news, and feeling overwhelmed by all the information and whirl of appointments that have appeared. Lisa is really glad to be able to support them through this difficult time. She’s had specialist training to explain the child’s condition in non-medical language, and helps the parents to understand what side-effects to expect. She listens to their concerns, taking care to respond sensitively, and breaks down the information they’ve received from the hospital. This is an important aspect of her work, and one that is very rewarding, as she knows how scary this diagnosis is for them.
Lisa reassures Jessica’s parents that part of her job is liaising with other professionals involved in the child’s care, and feeding back so that they are fully informed. She reviews the appointments booked in, explains the purpose of each one, and consolidates them where possible - saving the family unnecessary trips and stressful hospital visits. Lisa spends time with Jessica to assess her needs, and then makes some suggestions for ways in which Keech could help. She tells the parents about ‘Tots and Toys’ (a chance to meet other families in a similar position while their child has a specially designed play session), and organises some complementary therapy for Jessica. After reassuring the parents that she 26
is there for them whenever they need her, she then leaves for her next visit, feeling happy to have helped.
says there are so many things she wanted to do with Ben before he died, but his condition has deteriorated so quickly. She asks the heart-breaking question, how long Lisa thinks Ben might have left, and looks for reassurance. Lisa talks with her for a long time, showing her how to manage Ben’s symptoms, and to make him comfortable so his mother can hold him. Eventually, he becomes peaceful and falls into a deep, restful sleep.
After a long journey across Hertfordshire, Lisa arrives at the home of her second child- George. She feels it’s a shame she has to spend so much time travelling, as she’d really rather be working with the children than sitting in her car. Home visits are so important though, as many children are simply too ill to travel. Lisa spends time with George, and asks his mum how the play specialist sessions went. George had been feeling anxious about his operation, so Keech used his toys to show him what to expect. George’s mum is pleased to report that since the sessions George has been more relaxed and happier. Putting a scar on his teddy even helped his sister to understand what was happening. She thanks Lisa for arranging it, and this reminds Lisa why she loves her job so much.
This last appointment has been emotional, and Lisa knows it’s important that she allows a moment to compose herself. She wants to be on best form for the children and families she cares for and always wishes she could do more. She makes her case notes, finishes her phone calls, and checks whether she is on the rota to be on call overnight. She finally finishes feeling fulfilled, but knowing tomorrow is a fresh day with more important work to be done.
Whilst finishing up the visit, Lisa receives an urgent call from the children’s hospice admin team - one of the children cared for by Keech has become very ill. It’s nearing the end of her shift, but she needs to visit the boy’s house immediately. This is a high priority, therefore, her other appointments will need to be rearranged. Lisa knows the admin team will ring them, but intends to call them herself later in the day to make sure they are okay. She makes the trip to visit Ben who is seven months old and very poorly. His condition means he struggles to breathe and relax. She arrives at the house and notices Ben’s mum looks exhausted. His mum
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Only 1 in 3 Hertfordshire children get the hospice care they deserve.
Which child would you choose? Together we can choose them all. Please get in touch: fjmcmullen@mcmullens.co.uk
Registered Charity No. 1035089
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For your notes
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For your notes
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Please get in touch
Hertfordshire’s Children’s Hospice
Tel: 01582 492339 info@keech.org.uk www.keech.org.uk Keech Hospice Care, Great Bramingham Lane, Streatley, Luton, LU3 3NT. Registered Charity No. 1035089. 32