Goals and achievements

The information on this page is taken from our Annual Report 2006/7. On this page you can find out about HemiHelp's achievements in that year, and our aims for the future. These can be divided into three categories: Increasing awareness, Reaching more people, and Supporting members.

Our aim

Our overall aim is to put the individual first so that the unique and individual needs of all children with hemiplegia and their families are understood and met.

Objectives and Strategic Progress 2006 – 2007

The formal objectives of HemiHelp are to provide information and support for children and young people with hemiplegia and their families and carers, to increase public and professional awareness of the condition and to facilitate research into hemiplegia and its associated conditions.

The objectives for 2006-2007 and the strategies employed to achieve them were to:

• Increase awareness of HemiHelp and the needs of children and families living with hemiplegia, especially families recently diagnosed, through improving the quality and strategic distribution of our information materials to medical and other professionals
• Reach more people in order to offer support to every child and family affected by hemiplegia and build diversity, by extending our conference programme and other activities into new areas of the British Isles
• Support members to better understand their child’s needs and maximise their life chances by improving the Newsletter and website, developing new activities and reviewing our membership support systems
• Increase our income by broadening our fundraising activities and aligning fundraising more closely to our strategic aim - as a means of achieving the objectives set out above.

Performance and future plans

Increasing awareness

Excellent progress is being made in this area with the recruitment of HemiHelp’s first professional information officers, specifically we:

• Started to systematically review, update and improve all of HemiHelp’s information leaflets of which we now have more than 30
• Published, with the support of the Roald Dahl Foundation, a new and extended epilepsy leaflet – produced in partnership with the National Society for Epilepsy
• Produced an improved and extended leaflet on Botulinum toxin treatment – with financial support from the pharmaceutical group Ipsen and with advice from Dr. Charles Fairhurst of Guy's and St Thomas' NHS Trust
• Developed policy and networking activities through active membership of special interest groups such as the Children’s Acquired Brain Injury Interest Group
• Developed plans for producing a new DVD - explaining how HemiHelp supports families
• Established a Reader's Panel to evaluate all new leaflets to ensure they are useful, accessible and fully meet their needs
• Established a Parent’s Panel to help raise awareness of hemiplegia and HemiHelp by speaking about their experiences to community groups, events, conferences and the media

For the future:

• We are submitting funding applications to support the distribution of our information materials to every child development and paediatric centre throughout the country and will make all of our information materials available through our new website and in other languages.
• We will produce a short promotional DVD about HemiHelp and hemiplegia for general use.
• We have begun working with Mac Keith Press – one of the world’s leading publishers of paediatric neurology books - with a view to producing a new handbook on hemiplegia, aimed at parents and non-medical professionals.
• We are carrying out a feasibility study regarding the possibility of organising an international conference for medical professionals in 2008.
• At the end of the period under review we received news that HRH Princess Alexandra had kindly agreed to become our Royal Patron – we believe this important patronage will help to raise awareness of HemiHelp and of the needs of children with hemiplegia.

Reaching more people

Steady progress has been made in this area. There are about 13,000 children with hemiplegia living in the British Isles and we estimate that we are in contact with about a third of them – our aim is to reach every child and family affected. There is a regional aspect to this in that we have fewer members outside of south-east England. In Scotland for example we have just 150 members - where it’s likely there will be at least 1,200 children with hemiplegia. Therefore we:

• Organised and ran a successful conference for medical professionals in Glasgow – this was financially supported by the pharmaceutical company Allergan and included as the key note speaker Dr. Steffen Berweck of the Department of Paediatric Neurology and Developmental Neuroscience, Munich
• Established links with key children’s centres throughout Scotland including the Craighalbert Centre near Edinburgh
• Secured funds – with the generous support of the Dulverton Trust – to run an innovative work preparation scheme for school leavers in Bradford, targeting the local Pakistani community which has a higher than average incidence of children born with disabilities
• Secured ‘pump-priming’ funds to develop a family support project in Scotland
• Ran successful children’s activity days in the West of England (Bath) and in Northampton – both new locations for HemiHelp
• Ran a successful parents conference in West Sussex in partnership with Scope
• Developed links with organisations overseas – in particular with the Childhood Stroke and Hemiplegia Connections of Illinois, America.

For the future:

• In 2007 we will organise and run a follow up conference in Scotland (Edinburgh) for parents. We have established links with Capability Scotland, Scotland's leading disability organisation with a view to discussing joint working.
• In October 2007 we will organise and run a conference for medical health professionals in Dublin.
• Throughout 2007/08 we will extend our popular music workshops to new locations right across the British Isles. We are also planning a children’s activity fun-day in Yorkshire in the autumn of 2007.

Supporting members

There are two aspects to this objective; firstly the activities themselves - those things that HemiHelp does to support its members and secondly how well our internal membership systems help us to deliver these activities. With both of these elements excellent progress has been made, family membership continued to grow throughout the period and our supporter numbers grew by a spectacular 45%. In particular we:

• Improved and extended our quarterly members’ newsletter – now produced in the charity’s corporate colours and identity. We consistently receive positive endorsement from members about the quality and usefulness of the newsletter.
• Successfully completed the innovative on-line behavioural assessment pilot project - and are now evaluating this with Robert Goodman, Professor of Brain and Behavioural Medicine, South London and Maudsley NHS Trust
• Launched a new and exciting programme of music workshops for children and young people with hemiplegia. These help to increase self-esteem and build confidence as well as introduce children to the pleasures of music making. The workshops have proved popular with our family members and we are now extending them across the whole of the British Isles. We are grateful to a number of grant making trusts for help with the costs of running the music workshops but particularly to the St. James’ Place Foundation for their generous support
• Consulted members and others about our website and as a result have now developed an entirely new website; the Bridge House Trust generously supported this work. The new website, which will be launched in June 2007, will help to reinforce the charity’s corporate identity, better meet accessibility criteria and offer greater functionality to our members. During the period under review users of our message board increased by 34%
• Reviewed the communications support offered to our volunteer helpliners and as a result introduced a monthly office briefing for them, we also recruited additional helpliners
• Responded to more than 450 helpline calls
• Carried out an extensive and in-depth review of our membership data-base and other membership support systems

For the future:

• following evaluation of the on-line assessment project we hope to introduce this as a permanent service for our members.
• With the support of the new Head of Stepping Stones school we will offer an education advice email support service.
• We will produce a DVD of generic physiotherapy advice for use by parents with their children at home. From a recent parent’s survey 100% of respondents said that physiotherapy had been beneficial to their child, whereas only 40% said their children regularly did physiotherapy exercises at home.
• We will purchase a new membership and supporters’ database to integrate the current information that we hold and at the same time update all of our records. Using this new system we will seek to improve our membership conversion rates.
• We will run music workshops in at least 4 new areas of the country during 2007/08.