Views of providers of neuro-oncology services (responses to Survey 1) in 19 UK Children’s Cancer Treatment Centres on neuro-rehabilitation services for children with brain tumours
| Type of barrier or gap | Number of centres identifying barrier/lack n=19 (%) | Quotations |
| Lack of establishment of neuro-oncology rehabilitation services and dedicated space and resources | 11 (58) | ‘Lack of dedicated beds for Neuro-rehabilitation’ (Centre 3) ‘Availability of beds’ (Centre 4) ‘There are not any designated neuro rehabilitation beds within the centre and no neuro rehabilitation tariff for these patients.’ (Centre 5) ‘accessibility of beds/slots for rehab’ (Centre 12) ‘Lack of dedicated beds for Neuro-rehabilitation’ (Centre 3) ‘No dedicated neuro-rehab team in paediatric neuro-oncology and at present neuro-oncology rehab is separate from non-oncological neuro-rehab.’ (Centre 13) ‘service only developed early 2016’ (Centre 15) ‘Staffing and timing; prioritizing acute patient care and discharge above rehabilitation. No dedicated Neuro-oncology rehabilitation team’ (Centre 16) ‘There is not a clearly defined single point of contact for a neuro rehabilitation MDT/service’ (Centre 17) ‘Capacity of therapies facilities, although this will be improved following relocation to a new site next year. Can be barriers for patients from areas elsewhere (neuro-oncology in (PTC name) covers the whole of (region of PTC)).’ (Centre 9) ‘bed numbers on rehabilitation ward.’ (Centre 14) ‘Expertise, specialist equipment, availability of beds. Commissioning’ (Centre 4) ‘Resources and funding’ (Centre 8) ‘specialised equipment, inpatient beds and time, limited staff, community very limited resources. Time delay between inpatient and outpatient services impacts on children’s rehab. Inequality across region.’ (Centre 8) |
| Lack of communication with other departments and services | 5 (26) | ‘referral pathways and commissioning unclear’ (Centre 4) ‘local services refusing to support patients with complex needs.’ (Centre 4) ‘time constraints related to clinical deterioration’ (Centre 12) ‘Follow -up during and after treatment’ (Centre 16) ‘communication between centres’ (Centre 12) ‘Poor co-ordination of services in the community.’ (Centre 13) |
| Lack of individual components of the multidisciplinary team | 8 (42) | ‘Limited therapy time dedicated to neuro onc’ (Centre 10) ‘Lack of local SALT and educational rehab.’ (Centre 1) ‘Provision of SALT’ (Centre 7) ‘No dedicated SALT’ (Centre 10) ‘Lack of speech and language support.’ (Centre 13) ‘speech therapy in particular.’ (Centre 14) ‘educational support, SALT’ (Centre 1). ‘SALT - fulltime equivalent required’ (Centre 7) ‘Lack of speech and language support.’ (Centre 13) ‘No on site neuro-psychology but we have a business case in progress for one.’ (Centre 1) ‘Service demands - particularly neuropsych assessment and supportive psychology.’ (Centre 6) ‘Lack CAMHS/tertiary psychiatry’ (Centre 10) ‘Neuropsychology’ (Centre 1) ‘Neuro-psych assessment Psychology support.’ (Centre 6) ‘Neuro-psychology’ (Centre 8). ‘Neuro-psychology/psychology - stretched services’ (Centre 18) ‘reduced staffing for occupational therapy’ (Centre 14) ‘Difficulty in accessing on site dietitians due to low numbers of staff.’ (Centre 1) ‘Dietetics’ (Centre 1) |
| Outpatient-specific barriers | 8 (42) | ‘Need to be in-patient for formal neuro-rehab - haven't got a developed out-patient neuro-rehab service.’ (Centre 6) ‘Availability of outpatient rehabilitation is limited.’ (Centre 13) ‘Patients access community based services during follow up however there are variable issues with waiting time and intensity of treatment that patients need’ (Centre 10) ‘Out-patient therapy’ (Centre 10) ‘When patients are discharged - some difficulties with patients accessing local services’ (Centre 2) ‘Deficit of outpatient rehab service.’ (Centre 13) ‘patients have to remain admitted for longer since no local services could offer supportive therapies frequently enough’ (Centre 15) ‘Longer term/ongoing or newly arising rehab problems - sometimes difficult to re-access support/rehab services.’ (Centre 17) ‘Medium to long term rehabilitation’ (Centre 18) ‘gaps between inpatient and outpatients, that is, access is good while inpatient but once an outpatient access is slow and not a proactive service, the OP service is reactive.’ (Centre 12) |
| Absence of barriers | 3 (16) | ‘None’ (Centre 2) ‘Nil’ (Centre 19) ‘No major gaps’ (Centre 9) ‘We don’t have any gaps in the rehab services’ (Centre 19) |
. CAMHS, child and adolescent mental health services; PTC, Principle Treatment Centres; SALT, speech and language therapy.