Supporting every step of the half a heart journey

Little Hearts MatterHalf a heart...not half a life

C E L E B R A T I N G 2 0 Y E A R S

Annual Report 2014

Little Hearts Matter is committed to supporting, informing and empowering families on their journey when a child is diagnosed with half a working heart.

Our key groups include

• Families expecting a child with half a heart.• Children, young people and adults born with half a heart.• Families of those living with half a heart.• Bereaved families.

“A positive voice in a medical area that struggles

to provide a balance of information and support during one of the most

diffi cult times a parent can experience!”

3

Contents

Thoughts from our President 4 - 5

A note from the Chair 6 - 7

Our 20th Anniversary Year, Chief Executive Report 8 - 13

Youth Services 14 - 17

Treasurer’s Report 18 - 19

Statement of financial activity 20

Balance sheet 21

Celebration and sadness can often go hand in hand. The success of a child’s life may involve them leaving home for university with all the joy and anticipation that brings but it is always tempered with the unease of their parents letting go. Indeed, just the fi rst day of school can be a wrench. So as we celebrated twenty years of Little Hearts Matter with fun and parties, we all know that we would rather not have been needed at all.

But we are here and we are needed so we celebrate the involvement of our member families in our work. All of them have been on a journey bringing swinging emotions. The joy of birth, the sadness of discovering a heart condition, the relief of medical interventions, the pain that goes with recovery and for some of our families the dreadful grief of loss. But for twenty years Little Hearts Matter has been here to provide advice, help and comfort along the way.

For the next decade we are likely to be needed even more. As the uncertainty about services increases we must speak up for the best, as access to help becomes more complex we need to give advice and as medical care continues to change we need to ensure that is going in the right direction.

So congratulations to everyone, staff, trustees and most of all to our families. Together we will have more to celebrate as the work goes on.

4

Thoughts from our President Baroness Valerie Howarth

In 2014 the charity had 437 young members aged 10 and over 437

“Thank you for sending the DVD

‘I’ve only got half a heart...understand me?’, I took it

into school today and all the teachers are going to watch it at the next staff meeting, hopefully

they should be a bit more understanding when my

son is struggling.”

5

2494supported

parent members

At the end of our 20th Anniversary Year, I would like to take the opportunity to refl ect on another successful year for Little Hearts Matter.

As our charity has grown over the years, providing our core services of support and information to our members has remained our key objective, and we will continue to ensure this remains at the centre of our strategy. We remain a member-led organisation, with over two-thirds of our trustee board being members of the charity.

Over the course of the year, we supported nearly 2,500 parent members, sent out 5,500 newsletters, sent nearly 1,200 birthday cards and 450 bereavement cards, and supported and linked 400 young adult members, as well as receiving over 7,500 Facebook likes and gaining over 1,600 Twitter followers. In addition, over 600 people attended our Open Day, we ran six roadshows and twelve regional review meetings and we trained twelve new member support volunteers. We also built and opened a new memorial at the National Memorial Arboretum in Staffordshire as a place of refl ection and remembrance for our bereaved members.

All of this was made possible as a result of the support we get from our members. We raised over £300,000 last year, with the majority coming from donations and fundraising by our members and friends of the charity, and without their continued support we would be unable to provide the services we do.

As a trustee board, in close conjunction with our Chief Executive, we have worked over the last few years to strengthen the management and governance structure of the charity, work which has been led primarily by our need to be transparently accountable to our members and essential to ensure the charity’s longevity within the current economic climate. We have good fi nancial structures in place, a clear view of our risks and a strong strategy to ensure we get the balance right between revenue and opportunity to deliver to our members.

I would also like to thank everyone that works for, and on behalf of our charity, starting with our wonderful offi ce team. They are the people who

6

A note from the ChairPete Turner

keep the charity going on a day-to-day basis and are the first point of contact for our members and supporters. In addition, we have a team of volunteers who offer peer-to-peer support, raise vital funds for us, and get involved in the running of the charity.

As we look into the future, we have a growing membership, with an ever more diverse range of needs. We will continue to evolve to meet the needs of our membership, and continue to put member support and the centre of everything we do. Here’s to the next 20 years.

“Thank you for putting on a truly

wonderful event. It could not have been

more special.”

7

Anniversary years are exciting and full of potential. For Little Hearts Matter 2014 offered an opportunity for celebration and festivity but the year also afforded us the opportunity to refl ect on the way that the charity’s work has developed over the previous 20 years. Naturally the size of the organisation has grown but we wanted to be sure that we had not strayed from our guiding philosophy.

In 1994 the membership numbers were under 50, the charity’s seed capital was a mere £2,000 and the service provision was restricted to family-to-family support for parents treated in one cardiac unit, with added support from the Birmingham Children’s Hospital team. The key ethos of the organisation was to support and inform parents who were fearful for their children born with half a working heart.

Thankfully as we reviewed our work we were able to reassure ourselves that our members’ needs remained at the very core of the charity’s purpose. The fear, isolation and lack of understanding created when a child is diagnosed as having only half a heart will always be the overwhelming emotions for families so the ever growing support and information services that Little Hearts Matter provides remains key to helping families in times of despair.

8

sent

446bereavement cards

answered the phone to

10member queries or worries every day

Our 20th Anniversary YearChief Executive Suzie Hutchinson

9

“I love LHM and I like the fact that

it seems small enough to make the contact personal. It

feels more like a family. Even as my daughter has progressed out of babyhood and infancy, I still

like to have LHM near (like a safety net or comfort

blanket!)”

5500newsletters were published

and distributed

Social media is now an important and almost instant means of communication. Over the last year the charity has worked to build its online profile so that families in need can easily find the support they seek, gain answers to their questions and find a professional family to help them through their fears.

A roadshow around the country has allowed the charity to build greater links with health teams which has created a clearer referral of families in need and a growing use of Little Hearts Matter’s single ventricle specific publications. These trips around the country have also allowed the service team to meet with families to help them find solutions to the lifestyle challenges that all of the children face. We have also been able to celebrate the children’s successes and herald them, pioneering the way forward for young people living with only half a working heart.

The dedication of a memorial tree at the National Memorial Arboretum provides a place to celebrate the lives of the many children who have lost their lives to their heart condition. Bereaved families are a very important part of the Little Hearts Matter family and the memory of their children is important to us all.

The Open Day, our annual conference, has grown from an event for 50 people to a national conference that attracts 450 members, medical teams and other third sector organisations. With speakers from all around the country parents are able to explore the medical and lifestyle issues that will affect their children whilst the children themselves have an opportunity to meet with their heart peers and learn more about life with a serious heart condition.

Nonetheless there has of course been change.

People were able to stay in touch via our social media platforms

8,873

10

11

sent

50‘Get well’ balloons to children in hospital

“Thank you for my balloon it was a

great surprise and I love watching it fl oat above me

when I’m in my hospital bed.”

The need to take the voice of the children and families living with a cardiac disability into forums where the service requirements for their life are being discussed and altered has become an essential part of the charity’s work. The NHS England review of congenital cardiac services, the Children and Families Act for the support of children with medical conditions in school and the major change in social service provision for children and young adults with disabilities have all been areas where Little Hearts Matter has needed to raise major concerns about the welfare of children with single ventricle hearts.

As the charity has grown, the governance and management of the organisation has also become more professional enabling funds raised by the charity, especially in times of deep austerity, to be used more effectively. At a time when many small organisations are fi nding securing funds for their work impossible, the LHM team have worked to evolve its income strategy, creating a mixed portfolio of opportunity and revenue.

As we plan the future activity of the organisation we are secure in the knowledge that families positively want more of what the charity offers. Our growing membership, the amazing LHM family created within social media and the growing reliance on the charity by health, social service and education providers confi rms that we must maintain the services that we currently provide but also build on them to forge support services that meet the ever-evolving child and family needs and the ever-present statutory services restrictions.

Number of new volunteers trained to man our support line.

1212

13

“We went to LHM’s Open Day. The

children and young people are really inspirational - many coping

with physical fatigue, pacemakers, visual disturbances, headaches, heart failure and

all manner of physical symptoms, along with the uncertainty of their future. They face challenges to complete their studies and the

possibility of a future transplant, yet they are there and making the best of a rough

deal. A big shout out to all the LHM friends and family we met up with

again this weekend.”

14

Child and youth services are one of the biggest areas of growth for the charity. Over the last year alone the number of children, young people and young adults falling into the 10 to 24 year old age group has grown by 36% with the total number now being 437. The charity strategically planned for this increased youth membership deciding to invest in the youth service provision by employing a full-time Youth Leader. This has enabled the charity to make positive steps to provide a more structured health and welfare support service.

Throughout 2014, Little Hearts Matter saw a high rate of mental health issues with our young members from as young as 11 right the way up to our young adult members in their early 20s. Some of the issues that they struggle with are feelings of being an outsider, having a hidden disability, feeling out of control, and feeling as though they lost their childhood. These are things that most adults will never have to deal with, let alone our young members. The evolving youth support strategy has begun to look at their needs and build a compassionate and constructive service of peer-to-peer and professional support to help them through these issues.

The year also saw a great deal of activity for our young members, with two activity residentials, a number of regional roadshows and various publications being written and researched to help decrease their lack of understanding of life with their heart condition. With over 400 young members aged 10 to 24, we’ve worked hard to try and support the different age groups, who of course have very different needs. Over the year we’ve seen a steady increase in our young member numbers; partly from younger ones growing up and moving into the youth group and partly from new members joining us. Over the year we had a steady growth of around 115 new young members within the youth group.

Youth ServicesLaura Goodwin

15

Over the last year there has been a 36% increase in our over 10s membership

36%

“The best part of the Open Day was

meeting new people and seeing old

friends.”

16

Thanks to the wonderful fundraising efforts of one of our supporters, we were able to take 22 of our young members away over two weekends to do a number of adventurous activities. The aims of the weekends were to meet new people and try new things. The majority of attendees tried at least one new activity, and each of them challenged themselves to achieve something - no matter how small - which they all did. Reducing isolation is one of the aims of Little Hearts Matter as a charity. The majority of young members who attended the weekends said that they had made new friends as a result of coming. Overall the weekends were a success, and as there was some budget left over a similar event has been planned for 2015.

Having a number of regional roadshows around the country meant we were able to invite local families to come and meet with us and the youth leader to discuss any issues they might be having and how the charity can support them.

As the charity moves forward, we would like to see an increase in the usage of the youth service by our young members, which would involve publicising more what support we can offer as a lot of our young members don’t know about the various support services they can access within the youth service. We would also like to see more regional activity, to help connect young members with each other locally and to be able to reach the families who can’t necessarily travel to places like the Open Day or the activity weekends.

22 children attended an

Activity Weekend

number of birthday cards sent out

1063

17

“The best

bits about my PGL camp was the archery and abseiling and also

meeting other kids. I have stayed in touch with a boy

I met which is cool and we text each other

quite a lot.”

18

This set of abbreviated accounts for the fi nancial year has been extracted from the full set of accounts which has been subject to an independent examination. Queries with regards to the document can be addressed to the Treasurer through the Little Hearts Matter offi ce or website. A copy of the full accounts can be provided upon request from the LHM offi ce.

The Statement of Financial Activities (SOFA) shows that the net fl ows of funds have been more stable in 2014 and able to capitalise on the strong infl ow in the previous year. There has been a slight outfl ow of £7,167 which represents just 2% of the total income and is consistent with the strategy to align the income and expenditure of the charity.

The income for the year has decreased by 9% compared to the exceptional levels seen in 2013. This was expected and is against a backdrop of continued economic diffi culties in the UK which has been refl ected with a 22% fall in donations. The offi ce team still continue to seek funds from a variety of sources to spread the risk and, for 2015, further funding has now been obtained from Children in Need to support the youth work of the charity.

The costs for the year increased signifi cantly when compared to the previous year and the Trustee Board continue to monitor this area closely. These cost increases were planned and their key areas include: extra staffi ng to expand support for members; an expanded open day where a special event was held as part of the 20th Anniversary celebrations of the charity; two activity weekends were held for the children and further publications have been printed.

A signifi cant proportion of the cost base is fi xed with almost 60% representing the cost of employing the offi ce team and providing the offi ce itself. It is through this team that, despite keeping costs low, LHM has been able to ensure both the continuation of existing services and the expansion into new areas of support. A key piece of work in the year was to create a Little Hearts Matter Memorial in the National Memorial Arboretum to help members and friends have somewhere special to remember their loved ones.

Treasurer’s reportDavid Baumber

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The Balance Sheet shows the fi nancial position of the Charity as at 31 December 2014. This has not changed signifi cantly during the year as the expenditure was closely monitored and matched to income.

The Board of Trustees monitor the cash position carefully to ensure that there are enough unrestricted funds to meet day-to-day demands. At 31 December 2014 the unrestricted cash position represents six months of funding compared to the budget set for 2014 which is within the target range set by the Trustees of three to six months.

Sources of income

£72,049Donations

£140,157Fundraising

£55,899Corporate/grant funders

£30,000Legacy

£15,285Tax refunds

£3,202Other

Areas of expenditure

£112,635Services

£42,307Awareness

£54,485Fundraising

£9,342Governance

£104,990Running costs

Year ended Year ended 31 December 2014 31 December 2013 £ £Incoming resourcesDonations 72,049 22.8% 91,904 26.4%Fundraising 140,157 44.3% 144,263 41.4%Corporate/grant funders 55,899 17.7% 64,122 18.4%Legacy 30,000 9.5% 22,500 6.5%Tax Refunds 15,285 4.8% 22,500 6.5%BBC Lifeline Appeal - 0.0% 5,614 1.6%Other 3,202 1.0% 3,676 1.1%

Total income 316,592 100.0% 348,499 100.0%

Resources expendedCost of Generating Funds 15,485 4.8% 14,972 5.5%Charitable activities: Salaries 152,067 47.0% 130,161 48.2% Building costs 35,342 10.9% 29,046 10.8% Open day 31,755 9.8% 13,388 5.0% Printing/photocopying 14,145 4.4% 5,555 2.1% Newsletter 10,210 3.2% 4,021 1.5% Travel 10,764 3.3% 9,747 3.6% Public Relations 6,543 2.0% 11,194 4.1% Depreciation 5,365 1.7% 4,980 1.8% IT Support 4,668 1.4% 3,514 1.3% Recruitment/agency staff 4,358 1.3% 6,993 2.6% Postage 2,897 0.9% 8,518 3.2% Activity weekends 2,882 0.9% - 0.0% Telephone 2,572 0.8% 3,884 1.4% Youth forum 1,216 0.4% 3,034 1.1% Other 14,148 4.4% 12,814 4.7%Governance costs 9,342 2.9% 8,370 3.1%

Total expenditure 323,759 100.0% 270,191 100.0%

Net (expenditure)/income (7,167) 78,308

Opening fund balance 194,786 116,478Closing fund balance 187,619 194,786

Statement of Financial Activities

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31 December 2014 31 December 2013 £ £ £ £

Tangible fixed assets 6,500 10,159

Current assets: Debtors 12,697 11,434 Cash 174,560 183,206 187,257 194,640

Creditors: Amounts due within 1 year (6,138) (10,013)

Net current assets 181,119 184,627

Net Assets 187,619 194,786Analysed as: General funds 153,253 137,399 Restricted funds 34,366 57,387

187,619 194,786

Balance Sheet

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Little Hearts Matter11 Greenfield Crescent, Edgbaston, Birmingham, B15 3AU

0121 455 8982 I info@lhm.org.uk I www.lhm.org.uk

@LHM_UK Littleheartsmatter Littleheartsmatter

A company limited by guarantee, registered in England and Wales, number 06442071, registered office 11 Greenfield Crescent, Edgbaston, Birmingham, West Midlands, B15 3AU, registered charity number 1123290.