2. Children’s Heart Surgery Centres 1. Freeman’s Hospital 2. Leeds 3. Alder Hey Children's Hospital 4. University Hospitals Of Leicester NHS Trust 5. Birmingham Children's Hospital 6. Great Ormond Street Hospital 7.Royal Brompton 8.Guy's And St Thomas' 9. Oxford Radcliffe Hospital 10. University Hospitals Bristol 11. Southampton University Hospital

3. Most agree with changes ChangesNeed % Neither / nor I don’t understand the changes % Tend to agree% Strongly agree % Strongly disagree% Tend to disagree Not stated 1%3%1%

4. Good for clinical outcomes Neither/nor Very Positive Don’t know/Not stated Negative Positive Very negative = 2%

5. Reasonable to travel Neither/nor Very reasonable Fairly unreasonable Fairly reasonable Very unreasonable Don’t know/not stated = 2%

6. Biggest problems Overnight stay for parent Overnight stay for families Childcare Cost of travel Time off work Top 5 67% 50% 35% 32% 29%

7. 54% 29% Accommodation - biggest single problem No accommodation for parent overnight No accommodation for families overnight

8. Priorities around surgery Mean Survival and quality of life 9.7 Experienced team 9.5 Suitable accommodation 9.3 24 hour, 7 days a week surgical service 8.8 Facilities for mothers of newborn babies 8.3 Other specialists on hand 8.3 Environment suits child’s age 8.3 Surgical centre close to home 5.9

9. Priorities after surgery Mean Surgical centres and local units share information and communicate well 9.3 For older children, centres work jointly with adult cardiologists to ease transition to adult services 9.0 Follow up care close to child’s home 8.4 Healthcare professional talks to child’s school 7.4

10. Other important issues % Good links between local services/ parents/children and centres 5 Support/counselling for family3 Better sharing/receiving of information3 Travel stress3 Contact number for nurse support3 Continuity of care3 Accommodation affordable and close2 Larger centres impersonal2 Good aftercare2

11. 18% Evelina 14% G.O.S.H. 12% Leicester 11% Brompton 7% Birmingham Main Treatment Centre 7% Bristol 5% Southampton 5% Leeds 5% Alder Hey 4% Other 5% Oxford 4% Freeman

12. Most parents/carers satisfied with care Treatment the child received at this centre % Neither / nor Don't know/not stated % Fairly satisfied% Very satisfied % Fairly dissatisfied% Very dissatisfied 85% 12% Way that the centre met the other needs of you and your family? 62% 30% Base: All parents/carers (972) How satisfied were you with the: 1% 3% 1%

13. Discussion Groups

14. What a good service looks like Antenatal Screening Maternity Social care Multi-disciplinary specialist Affordable for parents Surgery Adult Services Experienced Surgical team Accommodation 24/7 care Postnatal care Education