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www.martinhouse.org.uk


Our Vision

Our mission

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.

Our `Values

• Being child and family focused • Listening to and valuing each other • Delivering high standards in everything we do • Being flexible, responsive, open and honest

port is act Re al p m I r a digit Ou in le b vaila also a d version! te anima YouTube r Visit ou o watch! el t chann

• Working holistically and in collaboration with others • Being dedicated, compassionate and caring

Supporting

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

7919

ouse.org.uk

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01937 84456

“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

www.martinh

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.

Bethany

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

97

new referrals

We supported

and young people 402 children

were accepted for our community bereavement service

overnight stays in our cooled bedrooms

professionals

Staff members

101

children

received visits at hospital

350

100 health care

nurses from

9 universities

completed student placements

500

provided

came to our open day

of day care

63 hours

people

Volunteers

64,000

Volunteering hours

3,197 bereavement support to

173 families

1,179

423 hours of specialist psychological support to children and families

Nights of care for children & young people

hours of bereavement support

2,285

231

hospitals

196

in 2017/18

26 new referrals

trained more than

17

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?

we accepted

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.

9

Antenatal

132

Bradford

18

Calderdale

Kirklees

8

Wakefield 0

Aged 5 - 13

95

35

North Yorkshire Out of area

6

Aged 16 - 19

56

Over 19 0

29 30

26

Aged 13 - 16

60

90

120

150

Diagram 2 shows the age of the children and young people we are actively caring for, as at 31 March 2018

Under 1 year

21

Aged 1 - 5

15

Hull Leeds

24

Aged 28 days - 1 year

14

East Riding

7

Neonatal

0

4

5

10

15

20

25

30

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.

8 63

Aged 1 - 5

138

Aged 5 - 13

46

Aged 13 - 16

38

Aged 16 - 19

109

Over 19

0

30

6 Martin House Annual Review 2017-2018

60

90

120

150

Martin House Annual Review 2017-2018 7


Education

Research

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.

Delivered Supported

22

new starters

Facilitated placements for

19

students

23

training sessions

to

165

from

professionals

32

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

15

organisations

at the hospice

Delivered

102 training sessions to the care team

150 competencies Topics including: Gastrostomy Nasogastric tube Ventilation Suctioning Medicines Tracheostomy

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21 nurses

confirmed through revalidation process

9

ongoing research projects

parents involved in guiding the Martin House Research Centre

90

12

publications

people attended the conference

18

presentations

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

£10,400

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 partnerships@martinhouse.org.uk 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

Thank you 10 Martin House Annual Review 2017-2018

Thank you

Thank you

Thank you

Our annual Glitter Ball, held at Rudding Park, raised

£125,000

£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

£1.1 million

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

£35,000

£30,000

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.

4. Effectiveness

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.

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Financial Summary

for the year ended 30 April 2018

Trustees

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

Incoming resources

2017/18 2016/17

Fundraising - donations

1,771

29%

1,795

29%

Fundraising - legacies

1,185

19%

1,171

19%

Funding from statutory sources

959

15%

959

15%

Fundraising - income from shops

1,143

18%

1,041

17%

Fundraising - events and lottery

640

10%

699

11%

Investment and other income

557

9%

586

9%

6,255

100%

6,251

100%

Resources Expended

2017/18 2016/17

Provision of care

5,185

73%

4,894

74%

531 8%

Shop running costs

799

13%

12%

Cost of fundraising events and lottery 327 5%

303 5%

Investment management cost

53

49

7,097 100%

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1%

Dr Robert Antony Smith Tim Straughan Jennifer Wilkinson Professor John Barry Wright Gordon Singer (appointed 11.01.18)

Chief Executive

Angela Monaghan (resigned 8.5.17)

Cost of generating donations & legacies 615 8% 917

Jenny Slee (Cromack)

1%

6,576 100%

Laura Mitchinson, Acting CEO (8.5.17-3.7.17) Martin Warhurst (appointed 3.7.17)

Patron

The Most Revd. & Rt. Hon. Dr. John Sentamu, Lord Archbishop of York

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Martin House Hospice Care for Children and Young People, Grove Road, Boston Spa, Wetherby, West Yorkshire, LS23 6TX Tel: 01937 845045 appeal@martinhouse.org.uk 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

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