Little Hearts Matter relies on the thoughts, comments and ideas of our members to:

·         Forward the single ventricle heart voice in arenas for change.

·         Gain a collective view on areas of member concern.

·         Gain the care, information and support priorities of the membership.

·         Plan support and information services.

·         Gain ideas from members on how to generate more awareness of the charity’s work.

·         Gain a greater awareness from members of how to generate income.

·         Seek out members priorities for research.

We would be grateful if you could complete the following questions to help us plan our priorities for the next few years.

Although this questionnaire is anonymous it would help us to ask just a few questions to help us group the answers we receive.

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* 1. Are you completing this questionnaire as a:

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* 2. Please could you tell us your age/the age  of your child?

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* 3. Please could your tell us your /your child's diagnosis?

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* 4. Please could you tell us what surgery you/your child has had?

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* 5. Please could you tell us what interventions have been done to you/your child?

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* 6. Please could you tell us if you/your child is in:

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* 7. Do you /your child receive:

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* 8. At what stage of your Half a Heart Journey did you find Little Hearts Matter ?

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* 9. Living with Single Ventricle Heart Disease.
Understanding the challenges faced by children, adults and their families living with a single ventricle heart is really
important to Little Hearts Matter.

What are the top five concerns, worries or stresses created in your every day life because of your child’s/ or your heart condition?

From one to ten, ten being most stressful score your feelings about each area of stress.
For example - Awaiting surgery  stress level 8.

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* 10. Isolation

The LHM team know that members often feel very lonely and frightened at different stages of their half a heart journey. Without wishing to pry into each member’s difficult times we would like to understand more so we can help more along the way.

Anonymously what part of your half a heart journey has been the most challenging?

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* 11. Please tell us about the times that have been the most challenging.

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* 12. What are your top three greatest sources of support?

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* 13. What could Little Hearts Matter do to help you further?

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* 14. Disability Benefits -
We know that completing DLA or PIP forms can be stressful so we would like to help more. This section of questions
will look more deeply into the challenges members face. Tick one or more of the following.

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* 15. Please tell us more about your experience of making a claim.

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* 16. Have you used Little Hearts Matter information and or support to help you with your claim?

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* 17. From one to ten, ten being the most stressful, score your feelings about the DLA/PIP application process.

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* 18. What other services could Little Hearts Matter offer to  help with benefit claims?

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* 19. Education
Making sure that your child is able to reach their full potential can be a challenge when they are at school. This section of questions will seek out your personal experiences and ways that the LHM team can help along the education path.
Please describe the challenges and successes that you have experienced during school or further education.
If your child has not yet started at school please write N/A.

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* 20. What support has there been to help you or your child reach their full potential?

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* 21. Have you or your child had a confirmed diagnosis of a learning difficulty. e.g. dyslexia or autism

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* 22. Have you used any of Little Hearts Matters Education support and information services?

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* 23. On a scale of 1 to 10, 10 being the highest, how stressful has it been securing health and or learning support during education?

1 5 10
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* 24. Tell us what further services Little Hearts Matter could offer to help the journey through education.

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* 25. Sports and Exercise.

Have you/ has your child had an exercise test?

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* 26. If yes did your Cardiologist tell you about safe exercise?

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* 27. Do you (as an adult with a single ventricle heart)/does your child take part in sport or exercise ?

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* 28. On a scale of one to ten, ten being the most difficult, how easy has it been to take part in sport set at the correct level for your/ your child's heart condition?

1 5 10
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* 29. Have you used any Little Hearts Matter resources to help explain exercise and half a heart to any teachers or coaches?

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* 30. What further information or support could Little Hearts Matter offer to improve safe access to sport and exercise?

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* 31. Medical treatment and care.

We are always interested to know about new styles of treatment and care and your priorities for information and
support relating to medical care.

Tell us about a service that you have been offered that improved your understanding of your/your child’s medical
care.

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* 32. During our last survey we asked you questions about how you felt at the time of diagnosis and through early treatments. This time we would like to ask questions that relate to the Fontan operation.

We know that for many parents it can be a difficult time and we would like to know more so that we can look find
better ways to support you.

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* 33. How did you prepare yourself for the Fontan operation?

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* 34. On a scale of one to ten, ten being the most stressful, tell us how difficult it was preparing and taking your child in to have the Fontan operation.

1 5 10
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* 35. We know that for parents the emotions surrounding the Fontan operation are difficult. Please, if you feel you can, could you explain how you felt at the time.

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* 36. Tell us about any new challenges your child has had since the Fontan operation.

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* 37. Have you accessed any of Little Hearts Matters services in the run up, during the hospital admission or once you have gone home? Please add any new ideas about ways that Little Hearts Matter could help more before, during and after the Fontan operation?

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* 38. Transition.
Moving from children's to adults health services is called medical Transition. The new Standards of Care suggest that the first discussions about transition should begin at the age of 12, although the move may not happen until a child is between 16 and 18. LHM is hoping to do more to support our young members through transition so we would like to learn more about your experience.

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* 39. At what age was Transition mentioned?

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* 40. Did you/your child have an opportunity to chat through transition with the cardiologist and transition nurse?

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* 41. Tell us about the challenges that transition has created.

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* 42. What services could LHM introduce that could help with transition to adult care?

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* 43. Over to you.
Please tell us what support or information about any aspect of life with a single ventricle heart you would like to see LHM introduce over the next few years.

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* 44. Research

Little Hearts Matter is aware of members growing interest in the research being conducted into the treatment and lifestyle issues for children and adults with a single ventricle heart condition.
LHM links to studies all around the country and reports findings to members via the newsletter and through social media but we are keen to do more.

What are the key areas of life with a single ventricle condition that you would like to see LHM involved in researching?

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* 45. How would you like to be informed about new studies and research findings?

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* 46. Awareness
Little Hearts Matter works hard to make sure that members are kept up to date about services and support but also
external issues that relate to health, education or social care. This section of the questionnaire will help us find out what more we need to do and seek yout your awareness priorities.

On a  scale of 1 to 10, 10 being the highest, how aware are you of the following?

Little Hearts Matters Events

1 5 10
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* 47. Support Services.

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* 48. Youth Services.

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* 49. Information, on our Website.

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* 50. Information in booklet form.

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* 51. Fundraising Initiatives.

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* 52. What the LHM staff do.

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* 53. Which of the following do you regularly use?

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* 54. On a scale of 1 to 10, 10 being the highest, how much do you read and take action when receiving the following?

E-Newsletter (LHM Beat)

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* 55. LHN Newsletter

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* 56. Little Hearts Matter Fundraising Newsletter

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* 57. LHM Facebook Posts.

1 5 10
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* 58. LHM Twitter (LHM Tweets)

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* 59. LHM Instagram posts

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* 60. Direct LHM emails.

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* 61. LHM Website.

1 5 10
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* 62. Direct mail in the post.

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* 63. When reading Little Hearts Matter information is the language used understandable?

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* 64. What do you think about the amount of information LHM sends out to members.

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* 65. Tell us your thoughts about LHM's communication style.

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* 66. 25th Anniversary

In 2019 Little Hearts Matter will celebrate its 25th Anniversary. We want to really celebrate this anniversary by raising awareness of the charity as well as funds to help us grow the charity’s services further.

How would you like to see us raise awareness of: 
   
Our work?     

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* 67. Our members needs?

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* 68. If we were to create a campaign what would you choose to be the focus?

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* 69. Name one campaign created by another charity that has gained your attention.

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* 70. How would you like LHM to celebrate our anniversary?

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* 71. Fundraising

Little Hearts Matter simply wouldn’t exist if it wasn’t for the funds raised by supporters. We have plans to not only
continue to do what we do, but to develop and grow as an organisation and this requires the backing of members and
their families to help raise awareness of Single Ventricle Heart Conditions and subsequently funds.

On a scale of 1-10, ten being high, how much responsibility do you feel you have to help raise funds for LHM?

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* 72. How do you feel about the level of fundraising campaigns and requests that come from LHM?

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* 73. From the following, what events would you consider doing to raise funds for LHM, please tick all the relevant boxes.

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* 74. If LHM were to stage its own fundraising event, what would you be most likely to attend and fundraising for?

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* 75. Corporate Support

Were you aware of the “Open Doors” campaign that LHM ran between June and September this year asking for support with businesses and charitable partnerships?

Would you be willing to approach your workplace about a potential partnership with LHM?

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* 76. Have you ever approached your workplace about funding for LHM?

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* 77. Over to You.
Thank you so much for taking the time to complete the questionnaire. It is so important that we learn from you, our members, what you feel about the services we provide. Your voice is invaluable.

So this final question is do you have anything else that you would like to tell us?

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* 78. Although this survey is anonymous some of your responses may require us to contact you.
If this is so please could you leave us your name and an email address.

Thank you.

T