Every child and young person has access to palliative care when and where they need it.
To help children and young people with a life-limiting condition, along with their families, to live well and fully, offering the best possible end of life care and support to the family in bereavement.
• Being child and family focused • Listening to and valuing each other • Delivering high standards in everything we do • Being flexible, responsive, open and honest
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• Working holistically and in collaboration with others • Being dedicated, compassionate and caring
gives families a chance to relax ...
Claire, Leo and Bethany’s Story Claire is mum to Bethany, 23, Bradley, 21 and Leo, 11. Leo and Bethany have Juvenile Huntington’s disease, a hereditary, degenerative condition that causes muscle spasms and dystonia, and in Leo’s case, epilepsy. The family are from Acomb, York and visit Martin House regularly for respite stays. Two years ago, their dad, who was diagnosed with Huntington’s as an adult, passed away. Bethany was diagnosed at 16 and has been visiting for respite stays in Whitby Lodge, our young adult unit, for around six years. Leo had his first respite stay at the hospice in December 2017 and has since been visiting for care and symptom control. “Leo’s condition sadly deteriorated two years ago” said Claire. “There are different degrees of Huntington’s and Leo’s condition has deteriorated faster than Bethany’s. “Before Martin House, I had nothing in terms of support. I’d been told about
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“Eventually, I decided to give it a try and I wouldn’t look back – it’s absolutely fantastic. Having two children in wheelchairs often makes me feel like a prisoner in my own home. Transport is difficult, and although I can take Bethany in the car by herself at the moment, I know that in time that may not be the case. “Bethany loves the care team running around after her, and being able to go to bed whenever she wants. She loves scary movies, ice cream, animals and baking. She even baked me a cake for my birthday while she was staying! “Martin House is like a second home to me, where I can relax and feel at home, as everyone takes the strain off me. I can enjoy a cup of coffee, take some time out from being a carer and recharge my batteries.
Charity No. 51
Martin House by Bethany’s genetics counsellor at the hospital in Leeds, but just the mention of the word hospice made me not want to go.
9 Claire & Leo
“I’m not sure what I would do without Martin House; from the care team to the housekeepers – everyone is such a big help and a huge source of support.” Martin House Annual Review 2017-2018 3
Our Year 2017/18
and young people 402 children
were accepted for our community bereavement service
overnight stays in our cooled bedrooms
received visits at hospital
100 health care
completed student placements
came to our open day
of day care
3,197 bereavement support to
423 hours of specialist psychological support to children and families
Nights of care for children & young people
hours of bereavement support
26 new referrals
trained more than
We make a real difference to the lives of children and young people with life-shortening conditions, and their families, but over the course of the year, what does that mean?
provided training at
overnight stays for parents
ÂŁ7.1 million to run Martin House
127,355 visits to our website
7,641* Twitter followers
2,750 hours of care delivered in the community
12,355* Facebook likes
658 Press articles
*as at 30th April 2018
4 Martin House Annual Review 2017-2018
Martin House Annual Review 2017-2018 5
Our Area &and Statistics We take referrals from West, North and East Yorkshire.
Diagram 1 shows where the families we are caring for live. We have broken this down by local authority district, as at 31 March 2018.
Diagram 3 shows the breakdown by age at referral during the period 1 April 2017 - 31 March 2018.
Aged 5 - 13
North Yorkshire Out of area
Aged 16 - 19
Over 19 0
Aged 13 - 16
Diagram 2 shows the age of the children and young people we are actively caring for, as at 31 March 2018
Under 1 year
Aged 1 - 5
Aged 28 days - 1 year
For some children and families their relationship with Martin House before their child dies is sadly very short. This occurs frequently in those who are referred in the antenatal and neonatal period and those who are under the age of one. This is indicated in the graphs above. On any single day the numbers in this age range are small but the number of referrals in a year is much greater. These children often die in the same year they are referred.
Aged 1 - 5
Aged 5 - 13
Aged 13 - 16
Aged 16 - 19
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Martin House Annual Review 2017-2018 7
Our Consultant Nurse leads on education and development, alongside two Practice Educators, who together, ensure our Care Team are competent to meet the needs of the children, young people and their families who rely on our care. Our competencies are bespoke to the hospice, reflecting the importance we place on meeting holistic needs. They ensure staff can meet the play, developmental and emotional support needs of children, as well as meeting clinical needs, such as administering medicines, specialist feeding, comfort and hygiene, as well as meeting the needs of those who rely on medicines and complex medical treatments, such as ventilators, pumps and dialysis. We are committed to supporting the development of professionals through the region. We have supported nurses, doctors and allied health professionals in hospitals throughout North, East and West Yorkshire and the Humber, helping them to provide better palliative care to babies, children and young people, and their families. Our senior clinical staff deliver training in universities throughout the region. Our Consultant Paediatricians deliver training at the University of Leeds, where our Consultant Clinical Psychologist is an Honorary Senior Lecturer. Our Consultant Nurse lectures at the Universities of Bradford, Huddersfield, Leeds and York. Our Practice Educators promote Martin House as a learning environment for professional student placements. In the last year, we provided more placements to student nurses than ever before. We’re also hugely proud to be one of only three centres in the UK that can support a specialist trainee in Paediatric Palliative Medicine, demonstrating our commitment to developing the workforce for years to come.
Facilitated placements for
Research and Martin House Research has always been important to Martin House – we know that it’s essential to enable children, young people and their families to receive the best care. We’re really proud to be able to contribute to the knowledge base that underpins children’s palliative care by producing high quality, robust and relevant research. Many of the research projects are influenced directly by the families, children, young people and staff working in palliative care. These include, different diets given by gastrostomy and supporting staff who deliver care. We’ve worked hard to encourage members of the care team to be involved in research activities and these include identifying the prevalence of the use of cannabis based preparations in children’s hospices and the role of cooled bedrooms.
The Martin House Research Centre The first year of the Martin House Research Centre has been a busy and productive one. In September 2018 the first conference was held, which was full to capacity. We are thrilled to have been awarded a number of prestigious, externally funded grants, to have presented at major conferences and to have published a wide range of academic papers in order to share our knowledge both nationally and internationally. For more information about the Martin House Research Centre, the research studies happening and the different ways you can get involved, please visit www.york.ac.uk/mhrc
at the hospice
102 training sessions to the care team
150 competencies Topics including: Gastrostomy Nasogastric tube Ventilation Suctioning Medicines Tracheostomy
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confirmed through revalidation process
ongoing research projects
parents involved in guiding the Martin House Research Centre
people attended the conference
Martin House Annual Review 2017-2018 9
Thank you Our sincere thanks go to all individuals and organisations who have so generously supported us in 2017/18 and those who have chosen to give anonymously. Your support is critical to enable us to support children and young people with life-shortening conditions, and their families. Thank you to all our corporate partners who make significant contributions in many different ways to support the care we deliver here at Martin House.
Corporate partners making significant contributions this year are…
Fundraising Highlights 2017-18 We received over
Uncle Mick’s Bike Ride took place in May - 40 riders took part, riding 127 miles along the Liverpool to Leeds canal, raising
If your organisation would like to know how you can get involved and work with Martin House to help make a difference in your community please call 01937 844569 or email firstname.lastname@example.org Thank you to all of the trusts and foundations who supported us in 2017/18 and thank you to those who continue to support our work year on year. We couldn’t do it without you!
Thank you 10 Martin House Annual Review 2017-2018
Our annual Glitter Ball, held at Rudding Park, raised
£1.1 million in legacies
Hundreds of supporters took on challenges for us this year – skydives, marathons, 10ks, half marathons and other events
Our shops raised more than
Our Dragon Boat Race at Roundhay Park, Leeds had 32 teams taking part 14 people ran the London Marathon raising money for us
14 couples took part in our Strictly Get Dancing event and raised
was raised in our 30th Anniversary car raffle
Thank you to everyone who supported the hospice in any way We receive very little government funding therefore we rely on the generosity of individuals and groups within our local communities, both large and small. Gifts in Wills continue to represent a significant proportion of our voluntary income. Martin House Annual Review 2017-2018 11
Plans for the future
Our focus in 2017/18 was on the implementation of the final year of our 2015/18 strategic plan. Our plans for 2018 include:
1. Care We remain committed to delivering and enabling the highest quality palliative care that meets the needs of all children and young people and their families in North, East and West Yorkshire. Care and compassion remain at the heart of what we do. The data tells us that there are more children and young people who could benefit from our services and it is our intention to continue to widen awareness and understanding of our services amongst both families and health and social care professionals so that we might meet the needs of a greater number of families across the region. We will continue to actively explore how we might adapt and grow and aim to ensure that our model of care is always relevant, responsive and meeting the needs of the families we support. In addition to maintaining the full range of palliative care services already in place, we have several strategic projects for 2018/19 including: • review and development of our health and well-being offer, including the development of our bereavement support services, psychology offer and in house facilities; • implementation of a new clinical management system that facilitates improvements in data collection, analysis and reporting; • a Transition project that enables support and better care coordination for teenagers and young adults as they move from children’s to adult services, which will pursue the development of partnerships with adult providers and ultimately a Transition Pathway; • implementation of our new referral criteria; • the enhancement of our community service including development and roll out of a Clinical Nurse Specialist role within both in-house and community settings, upskilling the current workforce and allowing a clear pathway for clinical career development; • continuing to strengthen links with antenatal and neonatal units throughout the region to improve our perinatal support for families; • embedding the Care Competency Framework and Care Certificate for all care team staff; and • a significant review of our current care facilities as part of a larger organisation-wide refurbishment project.
12 Martin House Annual Review 2017-2018
2. People Our people, both paid staff and volunteers, are our most valuable resource. Investing in and supporting them to do the best job they can is critical to ensuring that we deliver the best possible support to our families.
3. Resources In addition to our people, we have to ensure we have the right finances, buildings, vehicles, equipment, IT and other resources to deliver our vision and mission. • Financial Strategy The Trustees have adopted a strategic plan that will see annual deficits incurred for the next few years, to be funded from our reserves. The Trustees believe that this strategy is a good and appropriate use of our reserves and are confident that we will remain financially sustainable and able to support our children, young people and families in the longer term. We are continuing to review and develop our income strategy, to identify how we will generate the required increases in income for the longer term. • Fundraising
Following the resignation of our Director of Fundraising in January 2018, we have recruited to the new role of Director of Income Generation, who will lead all of our fundraising and retail activities, as well as investigate new ways to increase our income in the years ahead.
• ICT and Telecommunications We will ensure all existing ICT facilities are maintained to a high standard. • Facilities Following the feasibility study undertaken in early 2018, we will progress our plans to refurbish and improve our hospice facilities, in accordance with our strategic plans. We will further improve upon our health and safety throughout the organisation.
During 2017 and 2018, Martin House has embarked on several key projects to significantly improve our effectiveness in several key areas of governance. We are reviewing our approaches to Risk management, Health and safety, Policies and procedures, Financial reporting, Staff appraisals, Staff training records, and ICT – compliance with GDPR and development of new software.
5. Learning and Communication
We aim to be at the forefront of children’s and young people’s palliative care education and research and will continue to identify ways to deliver that, in collaboration with others.
Martin House Annual Review 2017-2018 13
for the year ended 30 April 2018
The services that we provide at Martin House are free to the families we support and the majority of these are funded by voluntary donations.
Will Lifford (resigned 19.10.17)
This financial information shows a summary of our incoming resources expended for the year ended 30 April 2018. It has been prepared consistently in accordance with the full audited accounts of Martin House. A full copy of our accounts is available on request, or can be accessed via our website www.martinhouse.org.uk
Clair Challenor Chadwick (resigned 19.04.18) Zoe Donaldson Timothy J Halstead Chair of the Board of Trustees (from 19.10.17) Dr John H Livingston Rifhat Malik Michael Millington Stephen A Plews Sue Rumbold Vice Chair
Fundraising - donations
Fundraising - legacies
Funding from statutory sources
Fundraising - income from shops
Fundraising - events and lottery
Investment and other income
Provision of care
Shop running costs
Cost of fundraising events and lottery 327 5%
Investment management cost
14 Martin House Annual Review 2017-2018
Dr Robert Antony Smith Tim Straughan Jennifer Wilkinson Professor John Barry Wright Gordon Singer (appointed 11.01.18)
Angela Monaghan (resigned 8.5.17)
Cost of generating donations & legacies 615 8% 917
Jenny Slee (Cromack)
Laura Mitchinson, Acting CEO (8.5.17-3.7.17) Martin Warhurst (appointed 3.7.17)
The Most Revd. & Rt. Hon. Dr. John Sentamu, Lord Archbishop of York
Martin House Annual Review 2017-2018 15
Martin House Hospice Care for Children and Young People, Grove Road, Boston Spa, Wetherby, West Yorkshire, LS23 6TX Tel: 01937 845045 email@example.com www.martinhouse.org.uk
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Registered Charity No. 517919. A Company Limited by Guarantee Registered in England & Wales No. 02016332. VAT Registration No. 686 5694 67