Reporting our Year


1st November 2014-2015

Trustees at 1st November 2014

Hazel Grieg-Midlane – Chair

Natalie Persoglio – Trustee

Denise Hadow – Treasurer

On 26th February 2015 Val Thubbron joined the board of Trustees.

At the Trustee meeting on 27th June 2015 the Board appointed the following Trustees:

Linda McQuaid

Andrew Wardle

Mehul Nathwani

Hazel Greig-Midlane resigned as a Trustee and Chair and Linda McQuaid was appointed Chair of the Board.

The Board is deeply grateful to Hazel Greig-Midlane for her outstanding contributions to Heartline and in particular for her recent work in maintaining the viability of the charity in her role as Chair.

At a meeting of the Trustees on 17th October 2015 it was confirmed that Jo Haughey should be appointed as Trustee.

STRUCTURE, GOVERNANCE AND MANAGEMENT

Heartline Families is a Charitable Incorporated Organisation registered with the Charities Commission No. 1153442.

The administration and management of the charity are the responsibility of the Trustees. There is no executive office and activities are carried out by Trustees and Volunteers and one occasional freelance administrator.

Volunteers undertake a considerable amount of work to support the services of the charity and to supply as many benefits as possible, including the online Forum (which is currently enabled via a Closed Page on Facebook while the website is being redeveloped with a new platform for the Forum), the Activity Weekends for Heart Children and Siblings, and the caravan holidays, amongst others.

Fundraising during 2014-2015 has resulted in improved sustainability for the future and a significant contribution to services arising from the provision of Grants and individual fundraising. This has also enabled the replacement of both holiday caravans providing holidays for families with a child with a heart condition over the next fifteen or more years.

The generosity of the individuals and trusts who have made this possible is greatly appreciated and the Board thank them sincerely.

There are some ‘hidden services’ which are provided by way of reductions in costs from suppliers and free services, all of which the Trustees are grateful for and in particular our long-time supporters Bison Grid Ltd for IT and Web development and support, Nick Mutton of XL Telecom Ltd for free telephone service, MedicAlert for medical bracelets, Golden Sands Holiday Park and Shorefield/Oakdene Forest Park for kitting out the new caravans with the main fittings.

OBJECTIVES AND ACTIVITIES

Heartline Families supports children with heart conditions and their families, whatever the condition, wherever it is treated.

Objectives

  • To identify and support “heart children” and their families
  • To develop an understanding of the children’s and families’ needs through information and discussion
  • To foster extended relationships between children, parents, the hospital staff and other interested parties
  • To provide amenities for child heart patients, not normally provided for under the National Health Service or other services provided by the State
  • To offer practical help to parents, children, hospitals, schools and other institutions interacting with or providing care for such children To promote and develop an understanding of family’s needs through information and discussions so they can be more effectively addressed
  • To invite receive contributions from persons and organisations, raising funds and organising suitable events for the benefit of the beneficiaries of the CIO
  • To carry out any lawful activity which shall further the objects of the CIO
  • To cooperate with other voluntary organisations with similar interests

How we help

Having a child with a heart disorder is very stressful, and no matter how helpful and supportive clinical staff are, most of the care and treatment of a child is given in his or her own home. Heartline’s families share their own hard earned experiences with other families and provide help and support unavailable elsewhere.

We aim to provide support for families, and to how the many effects that families can endure may be managed.

We publish the website (www.heartline.org.uk), newsletters, the Annual Review, our award winning Dental care for children with heart conditions, and Heart Children: a practical handbook for parents to provide as much information and support for families as possible.

Joining Heartline is free and may be made by application online. It is open to all families of children with a heart condition living in the UK and Ireland. Those living overseas may join and request and receive information through social media. Anyone interested in supporting heart families is also welcome to apply.

Bereaved families are welcomed as members to benefit from support and remembrance and contribute and share their own hard-won experiences.

Publications during 2014-2015 included:

Autumn Review

Spring newsletter

Summer newsletter

Dental care for children with heart conditions, which won the BMA Patient Information Awards 2015 Self-Care Award Runner Up

ACHIEVEMENTS AND PERFORMANCE – Chair Report

Despite being run almost entirely by Trustees and Volunteer support, Heartline has continued to improve its sustainability and provide a large number of benefits and services in 2014-2015.

We aim to provide a Wetsuit to any Heartline family whose child has a poor circulation and needs help to maintain a comfortable body temperature – over 160 delivered, for ages from 0-6 months to teenage. This service is much appreciated by families who benefit from the confidence that providing warmth and covering scars can give. The Hospital Saturday Fund and The Barbara A Shuttleworth Memorial Trust made grants to ensure this service might continue to be provided over the year.

Heart children: in its fourth edition has sold over 1000 copies to hospitals. Registered families are entitled to a free copy.   Heart children 5th edition was close to publication by year end but was delayed by changes taking place in the structure of the cardiac services in England. It is expected to sell many more in 2015-2016 when the new edition is available.

Caravan holidays were provided to 22 families during the year. Heartline ran a major campaign to replace the Oakdene caravan and ultimately achieved sufficient funding to replace both Oakdene and Mablethorpe caravans.

Our thanks go out to everyone involved in this campaign and in particular to the following:

Goldsmiths’ Company: The Albert Hunt Trust: Sir Jules Thorn Charitable Trust

The Theo Walker Fund: The Clothworkers’ Company: The Bruce Wake Charity

The Toy Trust: The Hedley Foundation: Garfield Weston Foundation: The Percy Bilton Charity

And Members of the ex-100 Club.

And towards Running Costs and Contents:

Sarah’s Star Fund: The Sykes Family: The Cooper Family: Caroline Mutton: Wendy Lynch and Nicola Garbutt and family.

With the new caravans in place the 2015-16 bookings are expected to head up towards accommodating 30 or more families over the year.

Activity breaks at PGL were carried out over two long weekends in August and 22 children and young people benefited. Sadly, two young people were unable to attend due to illness. Yet again, the evaluation carried out showed that these were not only hugely enjoyable but also met our aims of inspiring independence, confidence and mutual support.

Support to families: the Forum, our platform for parent-to-parent support had to be suspended during the year. The closed Facebook group, created to provide an interim though limited forum, has continued the parent-to-parent support between peers while the proposed website was designed and developed, which will re-establish this valuable resource. The website upgrade was planned early in the year and implementation begun in the second quarter, but the launch of the website and more secure forum will be in the 2015-2016 financial year.

The Trustee Board: during the year we have sought candidates for the position of Chair, and Trustees to strengthen the Board, particularly to advise in specialist areas such as fundraising and child protection. First of all, Val Thubbron came on board as a Trustee with a remit of Family Support, having been a valued volunteer on the Forum and other family support. Mid-year, the positions of Chair, Fundraising and Clinical Liaison with responsibility for child protection support were ably filled by:

Linda McQuaid (Chair)

Mehul Nathwani (Fundraising Trustee)

Andy Wardle (Clinical Relations Adviser)

Jo Haughey (Trustee Scotland)

Hazel Greig-Midlane retired as Chair and we extend our heartfelt thanks to her not only for her role as Chair since 2010, but her involvement in Heartline since 1983, and all the other extraordinary work she has done for Heartline in support of Heartline Families.

As Chair, my thanks to all trustees, current and former, also to our many volunteers during the year: Nicola, Kevin, Sharon, Ellis, Caroline, Wendy, Kerry, John, Rosie, Mark, Claire, James to name a few, but so many others have sustained our services.

Fundraising for 2014-2015

The fundraising initiative set up in July 2014 was to raise, in the main, the funding of at least one caravan replacement and to drive for as much income as possible for the other actions required for sustainability, such as a new secure platform for the Parents’ Forum as part of a redeveloped website. Both caravans have been replaced. The objective to redevelop the website and set up a secure Forum has been actioned and the design stage completed with the development agreed, to be completed in the New Year. The project time frame was extended beyond the financial year end to ensure that the structure and form of the website was workable and sustainable into the future.

Project funding for the Activity Weekends is a high priority for 2015-16 as well as sustaining general funding. A grant of £10,000 general funds was made by The Edith Florence Spencer Memorial Trust in 2014-15 for general funds, for which we are most grateful. It is unlikely this level of individual grant for general funds will be achievable again in 2015-16.

As part of the infrastructure development, the future fundraising strategy is to develop a nationwide group of Volunteer Fundraisers, together with or including our outstanding supporters who initiate so much on behalf of Heartline children, to improve and maintain general funding, with a Volunteer Co-Ordinator to work with volunteers to achieve long term income streams.

The investment in a new Website and Forum is aimed at attracting interest in the site and providing information on Heartline Services and Fundraising initiatives, as well as supporting the Forum service.

Independent Bookkeeper

Smarties Bookkeeping Limited

The Music Room

Hollywood Estate

Hollywood Lane

Bristol BS10 7TW

 

Independent Examiner

Sumner & Moore Limited

Chartered Accountants and Registered Auditors

The Studio

377-399 London Road

Camberley

Surrey GU15 3HL

 

Heartline Families Constitution

The Constitution is the governing document of Heartline Families, a Charitable Incorporated Organisation.  It sets out the objects of our charity and what we are allowed to do while achieving them. 

These are the Objects:

The objects of the CIO are

1) to promote and protect the physical and mental health, and wellbeing of children with heart disorders and their families in the United Kingdom through the facilitation of appropriate social support, information and practical advice

2) to advance the education of the general public in all areas relating to heart disorders in children.

The implementation of the Objects of the CIO to relieve children who are sick, convalescent, or disabled from heart disorders and to help and support such children and their families are carried out through:

  • Identification of such children and their families
  • Developing an understanding of the children’s and families’ needs through information and discussion
  • Fostering extended relationships between children, parents, the hospital staff and other interested parties
  • Providing amenities for child heart patients, not normally provided for under the National Health Service or other services provided by the State
  • Offering practical help to parents, children, hospitals, schools and other institutions interacting with or providing care for such children
  • Inviting and receiving contributions from persons and organisations, raising funds and organising suitable events for the benefit of the beneficiaries of the CIO
  • Promoting/revealing the interests or problems of individual beneficiaries through the proper regulatory channels
  • Carrying out any lawful activity which shall further the objects of the CIOIf this link does not work kindly email denise.hadow@heartline.org.uk to request a copy.
  • You can read the full Constitution Here