“The Framework sets out guidance for CCGs when assessing the needs of children and young people whose complex needs cannot be met by universal or specialist health services. As well as describing, in detail, the process to be followed when carrying out such assessments (and making subsequent decisions on the nature and extent of any care to be provided), the Framework includes a decision-making tool (the “DST”) to be used to assist in assessing children’s needs across 10 “domains” (covering areas such as breathing, eating and drinking and mobility). The DST sub-divides each domain into ascending “levels of need”, namely “no additional needs”, “low”, “moderate”, “high”, “severe” and “priority”, with descriptions given of the matters corresponding to each level of need in each domain. The Framework states that a child is “likely to have continuing care needs if assessed as having a severe or priority level of need in at least one domain of care, or a high level of need in three domains of care”: see para 148. However, the Framework makes clear that this is not a firm rule, and that assessors, when presenting recommendations to the decision-making forum, should “consider the level of need identified in all care domains in order to gain the overall picture”: para 149. In relation to the “breathing” domain, which is of particular importance in the present case, the Framework indicates (see pp. 32 – 33) that a child’s needs will be “severe” if the child: ‘Has frequent, hard-to-predict apnoea (not related to seizures); or severe, life-threatening breathing difficulties, which require essential oral pharyngeal and/or nasopharyngeal suction, day or night; or a tracheostomy tube that requires frequent essential interventions (additional to routine care) by a fully trained carer, to maintain an airway; or requires ventilation at night for very poor respiratory function; has respiratory drive and would survive accidental disconnection, but would be unwell and may require hospital support.’” ‘Has frequent, hard-to-predict apnoea (not related to seizures); or severe, life-threatening breathing difficulties, which require essential oral pharyngeal and/or nasopharyngeal suction, day or night; or a tracheostomy tube that requires frequent essential interventions (additional to routine care) by a fully trained carer, to maintain an airway; or requires ventilation at night for very poor respiratory function; has respiratory drive and would survive accidental disconnection, but would be unwell and may require hospital support.’”
“JP cannot effectively breathe independently because of poor respiratory drive following surgery for excision of a brain tumour this has also resulted in him experiencing breathlessness and an inability to cope with his respiratory need without a tracheotomy and supportive ventilation at night. JP is not on inhalers but he is on nebulised 6% sodium chloride (NaCl) twice daily and that can increase if his secretion is too think and he becomes too difficult to suction. JP has a tracheostomy because of 4 failed attempts at extubating as an inpatient because of the reasons listed above. Due to chemotherapy treatment he is immuno-compromised leading to greater risk of chest infection. JP requires regular suctioning (both mouth and tracheostomy due to unsafe swallow and lack of a cough reflex) to manage his secretions and he is on regular nebulisers of NaCl .His tracheostomy will need to be changed monthly unless it falls out by accident in which case it needs to be replaced. His tracheostomy tapes and dressing needs changing once daily. An Emergency Respiratory Care Plan is in place and must be followed in an Emergency. JP has had one aspiration episode since discharge. He had oral antibiotic and required a hospital visit. JP physiotherapy is associated with his mobility and not respiration. JP has carers at night to keep him safe and ensure his airway is patent at night. He can require suction between 10- 15times at night depending on his respiratory status. His parents say that his tracheostomy is very stable and requires suctioning between 4 - 8 times a days. SEVERE Need Agreed”
“We have recently completed a sleep study off ventilation which is now within acceptable standards so we are planning on withdrawing ventilation on review. I can touch base with you once we have reviewed him in clinic and can update you with the plan and send over any information you may need. I would suggest that if we succeed with withdrawing the ventilation he would score a high under stable tracheostomy that can be managed by the child or young person or only requires minimal and predictable suction/care from a carer. Hope that information is helpful for now and I will be in touch after his appointment.”
“Nurse assessor Conclusion: Health assessor has scored HIGH in this domain because evidence indicates that: JP has stable tracheostomy that can be managed by the child or young person or only requires minimal and predictable suction / care from a carer. Alexandra McClements Well Child Paediatric LTV CNS and the respiratory team at St Georges NHS trust scores HIGH; agreeing with the above. Agency report JP is copying very well with no ventilation overnight. Clinical notes confirm JP is self-ventilating overnight, no oxygen and sleeps well, requiring [suction] 1 -2 times a night but not every night.”
“In JP’s case, as indicated in the DST domains of care, JP does not meet the eligibility criteria as he scores 1 x High in the breathing domain with no other triggers in any of the Domains for his health needs. However, the health assessor is recommending eligibility for health funding to the CCG. This is because JP has a tracheostomy in situ and requires regular intervention for airway clearance. CHATT 19 However, 4 or 5 nights cover should be considered to ensure safe airway management.”
“We have recently completed a PSG on JP and sadly the results show that we need to restart his BiPAP again. I know that you were in the process of reviewing his care package, let me know if you need any further information. See the email below from Dr Chavasse. We will consider a transition to NIV in the new year with a decannulation if the oncology team agree.”
“In the meantime, yesterday evening I have received updated clinical info around a post ventilation stop sleep study. I have added this to the DST with my clinical views that this does not change the DST scoring from breathing. He is having central apnoeas however they are not unpredictable as they are occurring at night so I have added in is able to breathe unaided during the day but needs to go onto a ventilator for supportive ventilation. The ventilation can be discontinued for up to 24 hours without clinical harm.”
“We reviewed JP jointly with the oncologist, they were very happy with his progress and will continue to scan him 6 monthly to observe for any tumour regrowth. As you are aware, we recently conducted a full sleep study that has shown that JP was having significant central apnoeas, the oncologist explained that this would correlate with the MRI with some damage to the medulla. JP will therefore require ventilation until the foreseeable future. Our aim would be to remove the tracheostomy and deliver the ventilation via a non-invasive mask which will allow JP to have a better quality of life. We explained to the family yesterday that this is often a lengthy process and we would not start this process until the spring. We will meet the family in January and issue a mask for JP to get used too. We will also arrange a MLB procedure for the ENT team to review the tracheostomy and airway to ensure that it is safe for removal. We will then book him for a week inpatient stay to remove the tracheostomy and establish NIV. This is a process that is not always successful so if at any time JP would fail the tracheostomy would be reinserted. As JP’s health needs have not changed since he was discharged. Dianne I understand that you are awaiting the DST review with the commissioners, will the package be reduced in the interim?”
“Following the recent decision made at panel on Wednesday 27 November not to award Children’s NHS Continuing Care. We were further updated following a sleep study by the LTV team at St. Georges Hospital. This updated information was added to the completed DST and was found not to change the original decision. • Not eligible for Children’s NHS Continuing Care. • Health will fund 4 x 9 hour nights a week (term-time) and 5 x 9 hour nights (holiday time) • Term time carer will be provided 8:45 – 3:10 Enclosed with this letter, you will find the appeals process and relevant forms to be completed should you wish to appeal this decision.”
“I understand that you initiated an appeal in response to JP’s Continuing Care assessment that was undertaken on29 October 2019 (sic). Thank you for completing the appeals questionnaire and as a result of this I understand that Katherine Merritt (Children’s Continuing Care Nurse Assessor) undertook an informal resolution meeting with you on Wednesday8 January 2020 . During this informal meeting, Katherine outlined the continuing care process and provided an explanation as to why JP does not meet eligibility for children’s continuing care. I understand that you agreed with all the scoring in the domains and the conclusion was that you are not disputing the assessment but only want the care package to change back to pre-review hours. Because of this, I can advise you that your appeal is not upheld, as there is no grounds for appeal. As per our previous correspondence, the CCG does recognise that JP does have health needs and that is why we are going to be funding four nights 2200 - 0700 term time and 5 nights 2200- 0700 holiday time; with a carer being provided at school 0845 - 1515. If JP’s health needs do change in the future and another referral is made to continuing care then we will respond accordingly. JP will be reviewed yearly with his next review being27 November 2020 .”