Impact Repo-r19t 2o18
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 • Working holistically and in collaboration with others • Being dedicated, compassionate and caring
Martin House is a wonderful place. We loved going for short breaks as a family. The feeling when you get time just to be a ‘mum’ instead of nursing is truly amazing. My son still goes by himself but we are always made to feel welcome. Without these breaks as a ‘family’ we would not have survived. It is a magical, fun and truly a wonderful place with amazing staff and so much love. Sonia, Martin House parent Thank you again Martin House for giving me such precious moments with my two children. Martin House parent Martin House gave my husband and I a week with our baby boy after he passed away at just 1 day and 14 hours old. In that week we made lifelong memories, we were able to bathe him, create artwork using his foot and hand prints, dress him, hold him, take him for walks around their beautiful gardens and just spend precious time together as a family. 2 Martin House Impact Report 2018-2019
The staff at Martin House are just amazing, nothing was ever too much for them - the love and care given helped my husband and I come to terms with what had happened. We can’t thank them enough and miss being there every day. Kate, Martin House mum
Welcome from our Chief Executive As we look back, we reflect on another wonderful year of caring for, and making precious memories with, children and young people who have life-limiting conditions. Through care at our hospice and in the community, we’ve been able to be there for families when they’ve needed us most, and for that, we thank our wonderful supporters. Without the support of the local community, we simply couldn’t provide the vital services our hospice offers. The past year has been an important one for Martin House. There have been so many successes, many of which are celebrated in this report, and we have made immense progress with the development of our new strategic plan for 2019-2024. First and foremost, we are supporting more children, young people and their families than ever before, which is only possible with the help of people like you. To make sure this success continues, we have developed a new progressive strategy for the next five years which builds on our achievements over the past 32 years. This strategy is shown in more detail on pages 18 and 19.
retain the best people, valuing difference and involving staff and volunteers in our decisions. We will also continue to ensure we are well led and well governed as an organisation. As you read this Impact Report, I hope you enjoy reflecting on our successes from the past year. We look forward to you joining us on our forward journey, as we continue making the difference when it matters the most. Martin Warhurst Chief Executive
We have some exciting plans for the future. Over the next five years, we want to lead the way in providing excellent care, supporting children and young people with life-limiting conditions and those caring for them. This really is at the heart of what we do. We will also continue to educate, innovate and research. We will focus our activity to ensure we are well funded, developing current and new income in the most efficient way possible. We must work to attract and
Martin House Impact Report 2018-2019 3
“I was very emotional. Of all the things Elijah couldn’t do, he’d still been able to bottle feed up until shortly before we came for that first stay. It sounds such a small thing, but it signified something he could still do independently.” Elijah’s condition makes him, developmentally, similar to a newborn, but in the body of an almost four-year-old, which means Simonne and Steve are on constant alert. “During the night, we do need to wake when we hear him, and it’s not simply a case of stirring. You have no choice but to make sure you’re alert as you’re the emergency responder for your child in that moment. “Our lives have had to change since Elijah, and Martin House gives you a little bit of the old normality back. We leave our troubles at the door. I’ve got every faith in everybody there and sitting outdoors in the good weather among the nature is so soothing.” For Tobias, Elijah’s older brother, he realises that a lot of what the family do is dependent on how well his brother is.
Elijah’s Story Elijah is almost four years old and has an undiagnosed degenerative condition. He is supported by his mum and dad, Simonne and Steve, and his older brother, Tobias, who is eight years old. For Simonne and Steve, Martin House is a ‘homeaway-from-home’, for them to just be parents, and the family tend to visit three to four times a year. “The many different hats you wear at home you leave at the door when you arrive at Martin House,” says Simonne. “We no longer need to be nurses, physiotherapists and pharmacists all rolled into one. We can just be us, and I love the fact that your child is just a child when they’re at the hospice.” Elijah began to have epileptic seizures at just four weeks old, and at ten weeks old, doctors told Simonne and Steve that his condition was lifelimited. “I just didn’t know what that meant. Did it mean years of life or poor quality of life? I was totally shellshocked.” 4 Martin House Impact Report 2018-2019
Elijah was referred to Martin House by a specialist working at the hospital where he received care. “The first time we visited Martin House was just a couple of days after Elijah’s first birthday. We were so used to doing everything ourselves, so it was strange to find that actually there was someone to do all of Elijah’s medications. It was overwhelming, but in a really good way.
“Tobias has grown up learning how to help Elijah. He knows what to press on the various equipment we use and if something beeps, he’ll often say ‘I’m on it, Mum’. “With Elijah’s additional needs, it’s never been just about asking Tobias to help with something simple like passing me a nappy – it’s asking for something more complex like a syringe. “At Martin House, he has access to all this open space with an abundance of activities – toys, swings, you name it, and he gets dedicated time from the staff who can read a book with him, or do craft work.”
It’s hard to put into words what it means to us. As a parent, you become resilient and self-sustaining and I think a lot of it is about breaking the taboo of what a hospice, and particularly a children’s hospice, is. I wish everyone could see what a day at Martin House is like. It’s an amazing, magical place. It’s like coming home.
The hospice really ticks so many of our family’s boxes in different ways. It gives us the time for things we don’t always have time for while recharging our batteries. Martin House Impact Report 2018-2019 5
Our Year 2018/19
115
new referrals
We supported
and young people 428 children
were accepted for our community bereavement service
2,750 hours
of care delivered in the community
professionals
have completed placements
216 health care
362
Raised
£5.1 million
350
from fundraising and retail
Volunteers
7 universities
hours
visiting children in hospital
64,000
Volunteering hours
3,197 bereavement support to
155 families
1,179
3,197
nights of care for children and young people
Nights of care for children & young people
hours of bereavement support
overnight stays for parents
overnight stays in our cooled bedrooms
hospital trusts
Staff members
2,285
231
student nurses from
196
in 2018/19
31 new referrals
trained more than
8
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
500
613
people
Press articles
came to our open day
£ £ £ Advertising value equivalent in newspapers
provided
£7.6 million to run Martin House
63 hours
of day care
147,430 8,451* 13,627* visits to our website
Twitter followers
£1,235,619
Facebook followers
1,337 Linkedin followers
1,791
Instagram followers
*as at 30th April 2019
6 Martin House Impact Report 2018-2019
Martin House Impact Report 2018-2019 7
Our Area &and Statistics
Martin House takes referrals from West, North and East Yorkshire and referrals need to be made to us before the child’s 19th birthday. We take referrals for babies diagnosed in the antenatal stages and encourage both professionals and families to make the referral. Diagram 1 below shows where the families we are caring for live. This is shown by local authority district and all data is correct as at 31 March 2019. 132
Bradford
17
Calderdale
16
East Riding
13
Harrogate & rural districts
20
Hull
34
Kirklees
114
Leeds
45
North Yorkshire
5
Out of area
32
Wakefield 0
30
60
90
120
150
Diagram 2 shows the age of the children and young people we are actively caring for, as at 31 March 2019. 10
Under 1 year
84
Aged 1 - 5
149
Aged 6 - 13
Volunteering
Mark is a Pets as Therapy volunteer with his daschund, Eric. The pair have recently started volunteering at Martin House, but Eric has already taken a shine for this new and fun environment! Mark, Pets as Mark said: “Once Eric was Therapy volunteer certified as a PAT dog, I knew Martin House was where I wanted to volunteer with him. I was training to be a paediatric nurse and always envisaged myself working somewhere like Martin House, but four years ago I had a road traffic accident which caused a brain injury. “I got Eric as therapy for myself initially. He really does cheer me up. He’s incredibly docile, so I wanted him to have a helpful effect on others, too. He’s learnt where we’re going now so he gets very excited when he realises we’re approaching Martin House, as he loves to see the children and young people. “By volunteering, I’m doing something meaningful, as I’m currently working with my occupational therapist to find a way to get back into work in a sustainable manner.”
49
Aged 14 - 16
64,000
37
Aged 17 - 19
99
Over 19 0
30
60
90
120
volunteering hours
150
Diagram 3 shows the breakdown by age at referral during the period 1 April 2018 to 31 March 2019.
1,400 weeks of support
8
Antenatal
13
Neonatal Aged 28 days - 1 year
32
worth of volunteering years support
25 28
Aged 1 - 5
25
Aged 6 - 13
8
Aged 14 - 16
7
Aged 17 - 19
1
Over 19 0
5
10
15
20
25
30
30
volunteering roles
Mike Millington has been a trustee at Martin House for seven years Mike, Trustee and has a strong affinity to Martin House. “My son, Harry, died of cancer 20 years ago at the hospice and the support that was given to Harry, and to us, was just incredible. It’s since then that we’ve been exposed to Martin House and the amazing work they do, so we’ve carried on supporting the charity through fundraising and by giving talks at events. Our relationship with Martin House will always be there. “The image you have of a hospice and what it would be like couldn’t be further from the truth. It has a life-changing effect on you. You look back now and see how positively influenced you were by Martin House at a very challenging and vulnerable time. You don’t expect the level of support at all. “When I found out Martin House was looking for trustees, I thought what better way to try and give something back to the hospice. My role as a trustee involves working closely with staff at Martin House. There’s a fantastic bunch of people delivering amazing work of which I’m always in awe of. “The board of trustees all bring different skill sets to the table and are responsible for looking at the overall direction of Martin House, providing a check and balance for making sure the hospice will remain effective and be able to continue to provide outstanding care. We safeguard the assets of the charity, look at any risks and ensure that the strategy is clear and fit for purpose, in line with the vision and philosophy of Martin House.”
350 volunteers
£500,000 worth of time
Martin House Impact Report 2018-2019 9
Clinical Nurse Specialists In January 2019, we introduced Clinical Nurse Specialists (CNSs) to our care team. The CNSs are all highly experienced nurses in the field of children’s palliative care, who deliver specialist nursing to children, young people and their families at home, increasing our provision of community care and support for children living with a life-limiting condition in our region. At Martin House, we began to offer homebased end of life care for up to 72 hours in August 2017. This care was in addition to the planned care our community team provide children who are too young or too sick to attend school and those families who cannot access the hospice. We recognised that there are many children living with palliative care needs within our region who were not accessing any of the services offered by Martin House and we wanted to meet this need. We have built on what we do well within our hospice building, offering specialist palliative care and we’ve taken our care into family homes, thereby reflecting the wishes and meeting the needs of children, families and the professionals we work alongside.
Our CNS Team
The introduction of the CNSs has given us the opportunity to develop our community
Katie Rich 10 Martin House Impact Report 2018-2019
Helen Storton
service, now offering unplanned care at home and advance care planning. We have been able to develop our community staff nurses, enabling them to provide a broader range of home-based care services through bedside training and care planning. The CNSs now attend more child-specific meetings allowing us to improve interagency working, consistency and continuity of care for the child or young person and, importantly, allows us to offer families choice in the place of care for symptom management and end of life care. Some of the other key benefits acknowledged to date include discharge planning for children in hospital, shortening their length of stay, and the avoidance of hospital admissions through advance care planning. We understand that families want greater choice in their place of care and that many families are choosing to receive palliative care at home. Developing our team in this way has enabled us to start to meet those needs, reaching a greater number of families and professionals across our region. We are looking forward to building on this progress and developing the service even more in the coming months and years.
Danielle Lewis
Catherine Martin
Martin House Impact Report 2018-2019 11
Bereavement Support Our established and experienced team offers bereavement support to families who have used Martin House, to families whose child had a life-limiting condition but who did not use the hospice and also to families who have lost a child suddenly. At Martin House, our bereavement team is made up of trained counsellors, offering a range of services from individual meetings to group sessions. Group sessions are designed to allow time for reflection through discussion, working alongside other bereaved parents. Our children’s groups give brothers and sisters the opportunity to explore and understand their grief, thoughts and feelings. The numbers we accept for bereavement support have increased over the past three years so that we now run our parent and sibling bereavement groups twice each year. There are two additional bedrooms within Martin House, and one within Whitby Lodge, which we call our ‘Little Rooms’. These rooms can be cooled, and we also have blankets and mattresses which cool the body enabling a baby, child or young adult to remain at the hospice for up to five days after they have died. Parents and siblings can stay at the hospice as well which gives them the opportunity to navigate the process of saying goodbye to their child or young person in their own time and in their own way. Families often tell us how precious it was to be able to spend this time with their child, when they are also confronted with the demands of making funeral arrangements and resuming some of the activities of daily life. We are continually working to develop our service to ensure that we are meeting the needs of the families we support.
It was good to talk to someone about how I felt and help me understand my grief more at a time when I just didn’t know what to do
25
children were supported through our bereaved brothers and sisters’ group Time4Us2
“I learned that I’m special” “It’s okay to be sad” “I am able to put things forward and be brave” “I don’t need to hide my emotions”
17
children
went on a bereavement overnight stay
Martin House parent
Thank you for inviting me to all the bereavement groups. Everytime I go I always have lots of fun, I feel like I can be myself Martin House Impact Report 2018-2019 13
Thank you
Our partners play a vital role in ensuring we are able to continue our work, helping us raise awareness, providing volunteer and strategic support, alongside gift-in-kind and fundraising activity.
Fundraising Highlights 2018-19
Glitter Ball raised
£134,000
Yorkshire Three Peaks raised Dragon Boat £17,000 raised
In order to continue the critical work we do across West, North and East Yorkshire we are looking for organisations to join Martin House. Together we will create a partnership intrinsically linked to your company’s objectives and ethos, with a varied calendar to engage your staff, stakeholders and customers, alongside impactful PR and communications.
£70,000
To find out how we could work together, contact partnerships@martinhouse.org.uk
450 regular givers
5,957 lottery players
Uncle Mick’s annual bike ride, cycling the Liverpool to Leeds canal in May 2018 raised
£18,800
Our shops raised
Our 12 London Marathon runners raised
£27,000
£1,270,000 We received
£1,536,000 in legacies
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 for support. We are very grateful for the gifts left to us in wills which continues to represent a significant proportion of our voluntary income.
14 Martin House Impact Report 2018-2019
Martin House Impact Report 2018-2019 15
Research Centre
Financial Summary
The Martin House Research Centre was established in January 2017 with the aim to undertake high quality research, the outputs of which, should be the evidence which will help to ensure that all children and families receive equitable, high quality care.
for the year ended 30 April 2019 This financial information shows a summary of our incoming resources expended for the year ended 30 April 2019. It has been prepared consistently in accordance with the full audited accounts of Martin House.
25
completed
4
invited presentations at national and international conferences
research studies
11
successfully awarded
studies underway
3
studies in set up
10
external grants totalling
ÂŁ2.1 million
16 Martin House Impact Report 2018-2019
published
14
academic papers
A copy of our full accounts is available on request, or can be accessed via our website www.martinhouse.org.uk
Incoming resources
2018/19 2017/18
Fundraising - donations
1,654 24%
1,771
29%
Fundraising - legacies
1,536 22%
1,185
19%
Funding from statutory sources
1,047 15%
959
15%
Fundraising - income from shops
1,270
1,143
18%
Fundraising - events and lottery
725 11%
640
10%
Investment and other income
677 10%
557
9%
6,909 100%
6,255
100%
18%
Resources Expended
2018/19 2017/18
Provision of care
5,534
72%
5,185
73%
Cost of generating donations & legacies
621
8%
615
8%
Shop running costs
961
13%
917
13%
Cost of fundraising events and lottery 496 6%
327 5%
Investment management cost
1%
53
100%
7,097 100%
53
7,665
1%
Martin House Impact Report 2018-2019 17
Our newly developed strategy, as detailed on this page, enables us to look to the future and ensure that we continue to anticipate and respond to the needs of babies, children and young people with life-limiting conditions, and their wider families. We expect the number accessing our services to increase over the course of the next five years and we also expect the cost of running Martin House to rise considerably over the same period. This will be supported by a renewed focus on generating additional income to support our services. We also have plans to launch a capital appeal to fund the development and enhancement of our hospice building and facilities.
OUR VISION: Every child and young person has
access to palliative care when and where they need it Strategic Initiatives
Strategic Initiatives A. Meet or exceed regulators’ requirements
C. Ensure all assets meet the needs of service users
A. Raise sufficient income to ensure the future financial sustainability of the organisation
B. Ensure the highest standards of corporate and clinical governance
D. Be a sector leading research active organisation
1. Ensure services are of the highest quality, safety and effectiveness
OUR CORE Strategic Initiatives A. Review and develop the provision of a sustainable emotional support and bereavement service C. Review and develop a therapies and wellbeing offer
18 Martin House Impact Report 2018-2019
B. Develop a transition pathway
4. Meet the diverse needs of children, young people, their families and supporters
D. Review and develop our supporter journeys
2. Have the right resources to deliver care
B. Plan and complete the refurbishment/ rebuilding project and funding plan
D. Maximise the use of data and digitalisation throughout the organisation
C. Recruit, retain and develop the right staff and volunteers
OBJECTIVES 3. Raise awareness and reach more people
Strategic Initiatives A. Promote the work of the hospice
B. Develop our community service provision
C. Increase collaborative partnership working at a regional and national level
Martin House Impact Report 2018-2019 19
Trustees Timothy J Halstead (Chair) Sue Rumbold (Vice Chair) Dr Anne-Marie Childs (appointed January 2019) Zoe Donaldson Dr John H Livingstone (resigned 17 January 2019) Rifhat Malik MBE Emeritus Professor Patricia McKinney (appointed January 2019) Michael Millington Stephen A Plews Jenny Slee (Cromack) Gordon Singer Dr Robert Antony Smith (resigned 17 January 2019) Tim Straughan Jennifer Wilkinson Professor John Barry Wright CEO Martin Warhurst Patron The Most Revd. & Rt. Hon. Dr. John Sentamu, Lord Archbishop of York
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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