Parents’ views (responses to survey 2) of the neuro-rehabilitation health needs of children and young people diagnosed with a brain tumour
| Needs | Number of respondents expressing need, n=18 (%) | Quotations |
| Good communication between healthcare professionals and families | 7 (39) | ‘The lack of communication, it feels very isolating’ (Respondent 12) ‘…day(care) access with knowledge and skills’ (Respondent 16) ‘More help on understanding on what to do after all treatments are finished.’ (Respondent 6) ‘further info when leaving hospital. i was just told to check nhs website.’ (Respondent 10) ‘Communication about what is happening and why it is happening.’ (Respondent 2) ‘More information on posterior fossa syndrome’ (Respondent 18) ‘More information about side effects of chemo- we are given a sheet detailing all possible side effects but that was as alarming as it was informative.’ (Respondent 2) ‘People should not be sent to home from hospital with a 10 year old after emergency brain surgery and not even have a contact phone number.’ (Respondent 5) |
| Specific rehabilitation services | 14 (78) | ‘Support for children and parents’ (Respondent 5) ‘rehabilitation programme and psychological/social help’ (Respondent 16) ‘Besides treatment for the tumour itself, psychological help has been the most important for us’ (Respondent 15) ‘better support for parents and carers in dealing with changes and more psychological help’ (Respondent 14) ‘For us all aspects. Desperately needed learning support, physiotherapy, psychological support, OT input for physical support’ (Respondent 7) ‘Psychological help on accepting what you have been through, how to move forward and having help to understand the changes brain damage has caused.’ (Respondent 6) ‘Ot and physio, speech, counselling if need be’ (Respondent 10) ‘That professionals are experienced with the condition. Understanding, empathy and consistent interventions to meet their needs. Prompt referrals for mental wellbeing. Support for the child and the family.’ (Respondent 1) ‘more support after care in dealing with what’s just happened and support adjust to try to go back to normality’ (Respondent 14) ‘How can we stop CNS tumours affecting our children's behaviour and mood.’ (Respondent 11) ‘mood swings…’ (Respondent 10) ‘What support is available for social inclusion?’ (Respondent 7) ‘Counselling should be offered to parents as well as children. I suffer from ptsd now as a result of watching helplessly as my daughter fought for her life. It has a deb(ilit)ating effect on all of the family’ (Respondent 17) ‘Physio, OT… straight away’ (Respondent 18) ‘Physiotherapist’ (Respondent 13) ‘Help groups, social worker, practical support.’ (Respondent 7) ‘Access to physio as an outpatient needs improving.’ (Respondent 2) |
| Better organisation and management of rehabilitation services | 5 (29) | ‘more specialist rehab locally for acquired brain injury from surgery…’ (Respondent 16) ‘nhs services away from (name of PTC) have been a struggle for us in our area’ (Respondent 4) ‘services need to be better joined up and look at the future needs of these kids, not just at getting them to survive. What’s the point of surviving a CNS tumour if the child/young person has no life.’ (Respondent 11) ‘More investment in rehab could dramatically alter the long term disability of a child. If more resources at this stage more recovery equals better standard of life and less long term support from NHS for rest of their lives. Cheaper in long term…’ (Respondent 9) ‘Plus all the recent budget cuts to services has meant very little intervention.’ (Respondent 1) |
CNS, central nervous system; PTC, Principle Treatment Centres.