Saturday 27 April 2024
Internal Reference Number: FOI_6684
Date Request Received: 18/07/2022 00:00:00
Date Request Replied To: 10/08/2022 00:00:00
This response was sent via: By Email
Request Summary: Treatment information so several conditions
Request Category: Private Individuals
| Question Number 1: For the condition or probable/ suspected condition of: i) Pandas (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 1: 1. clinical guidance - none 2. policy - none 3. procedure - none 4. diagnostic pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 5. treatment pathways - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 6. management pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 7. The clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Not formally coded in outpatients - but would probably use codes F419 (anxiety) and F958 (Other tic disorder) 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - Please see refusal notice attached. 9. how many were referred for treatment - Please see refusal notice attached. 10. how many referrals rejected - Please see refusal notice attached. 11. how many referrals were accepted - Please see refusal notice attached. 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? Please see refusal notice attached. | |
| Question Number 2: For the condition or probable/ suspected condition of: ii) PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 2: 1. clinical guidance - none 2. policy - none 3. procedure - none 4. diagnostic pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 5. treatment pathways - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 6. management pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 7. The clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Not formally coded in outpatients - but would probably use codes F419 (anxiety) and F958 (Other tic disorder) 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - Please see refusal notice attached. 9. how many were referred for treatment - Please see refusal notice attached. 10. how many referrals rejected - Please see refusal notice attached. 11. how many referrals were accepted - Please see refusal notice attached. 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? Please see refusal notice attached. | |
| Question Number 3: For the condition or probable/ suspected condition of: iii) Long COVID Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 3: 1. clinical guidance - none 2. policy - none 3. procedure - There is a CCG agreed pathway (see below) 4. diagnostic pathway – This is via the Long COVID Hub: The South West Long COVID Hub for children and young people opened to referrals in September 2021. We offer multi-disciplinary assessments with advice and support for children and young people with suspected Long COVID. Children and young people can be referred for assessment by both paediatricians, GPs and other health professionals. A trained specialist clinician will conduct an online video assessment with the child or young person and their parents/carers and provide support and early symptomatic advice. The assessing clinician will then discuss the case with the specialist hub to decide if further investigations are required and make further recommendations on appropriate treatment. The Hub includes specialists in paediatric neurology, cardiology, respiratory medicine, fatigue, general paediatrics, psychology and psychiatry. This was a pilot which finished in May – now the Hub still operates but the referral route is via specialist Chronic Fatigue Services (i.e. suspected long covid gets referred to chronic fatigue clinic who will then refer on to the long covid hub) 5. treatment pathways – This is coordinated by the Long COVID Hub depending on symptoms and patient need. 6. management pathway - This is coordinated by the Long COVID Hub depending on symptoms and patient need. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. – depends on symptoms - not currently coding Long COVID 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. – This information is collected by the Long COVID hub. 9. how many were referred for treatment - please see refusal notice attached 10. how many referrals rejected - please see refusal notice attached 11. how many referrals were accepted - please see refusal notice attached 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - please see refusal notice attached | |
| Question Number 4: For the condition or probable/ suspected condition of: iv) Immune mediated neuro behaviour conditions Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 4: 1. clinical guidance - none 2. policy - none 3. procedure - none 4. diagnostic pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 5. treatment pathways - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 6. management pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 7. The clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Not formally coded in outpatients - but would probably use codes F419 (anxiety) and F958 (Other tic disorder) 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - Please see refusal notice attached. 9. how many were referred for treatment - Please see refusal notice attached. 10. how many referrals rejected - Please see refusal notice attached. 11. how many referrals were accepted - Please see refusal notice attached. 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? Please see refusal notice attached. | |
| Question Number 5: For the condition or probable/ suspected condition of: v) Neuro psychiatric conditions Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 5: 1. clinical guidance - depends on cause. Would use guidelines from Paediatric Innovation, Education and Research Network - PIER Network Homepage neurology section. - https://www.piernetwork.org/ 2. policy - none 3. procedure - none 4. diagnostic pathway - depends on individual patients presentation. 5. treatment pathways - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process 6. management pathway - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - not formally coded in outpatients. Would depend on symptoms and presentation. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See attached refusal notice 9. how many were referred for treatment- See attached refusal notice 10. how many referrals rejected - See attached refusal notice 11. how many referrals were accepted - See attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? See attached refusal notice | |
| Question Number 6: For the condition or probable/ suspected condition of: vi) Behavioural changes or altered behaviour Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 6: 1. clinical guidance - depends on cause. Would use guidelines from Paediatric Innovation, Education and Research Network - PIER Network Homepage neurology section. - https://www.piernetwork.org/ 2. policy - none 3. procedure - none 4. diagnostic pathway - depends on individual patients presentation 5. treatment pathways - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process. 6. management pathway - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - not formally coded in outpatients, would depend on symptoms and presentation. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See attached refusal notice 9. how many were referred for treatment- See attached refusal notice 10. how many referrals rejected - See attached refusal notice 11. how many referrals were accepted - See attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? See attached refusal notice | |
| Question Number 7: For the condition or probable/ suspected condition of: vii) Sudden onset tics Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 7: 1. clinical guidance - none 2. policy - none 3. procedure - (not sure what this means) 4. diagnostic pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 5. treatment pathways - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 6. management pathway - Referred by GP, seen by Paediatrician < Investigations and management as appropriate to the case. 7. The clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Not formally coded in outpatients - but would probably use codes F419 (anxiety) and F958 (Other tic disorder) 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - Please see refusal notice attached. 9. how many were referred for treatment - Please see refusal notice attached. 10. how many referrals rejected - Please see refusal notice attached. 11. how many referrals were accepted - Please see refusal notice attached. 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? Please see refusal notice attached. | |
| Question Number 8: For the condition or probable/ suspected condition of: viii) Sudden onset ocd Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 8: 1. clinical guidance - depends on cause. Would use guidelines from Paediatric Innovation, Education and Research Network - PIER Network Homepage neurology section. - https://www.piernetwork.org/ 2. policy - none 3. procedure - none 4. diagnostic pathway - depends on individual patients presentation. 5. treatment pathways - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process 6. management pathway - depends on cause. Would usually involve CAMHS and Paediatric Neurologist in process 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - not formally coded in outpatients. Would depend on symptoms and presentation. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See attached refusal notice 9. how many were referred for treatment- See attached refusal notice 10. how many referrals rejected - See attached refusal notice 11. how many referrals were accepted - See attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? See attached refusal notice | |
| Question Number 9: For the condition or probable/ suspected condition of: ix) Sudden onset eating difficulties Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 9: 1. clinical guidance – depends on the cause – have guidelines for eating disorders 2. policy - have guidelines for eating disorders 3. procedure - have guidelines for eating disorders. For all other causes it would depend on patient presentation. 4. diagnostic pathway – Referred to Paediatrics by GP or by CAMHS or by Dietitian. 5. treatment pathways - Inpatient or Outpatient depending on severity. Joint working with Dietitian (and with CAMHS if needed) 6. management pathway - Inpatient or Outpatient depending on severity. Joint working with Dietitian (and with CAMHS if needed) 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. – Depends on cause. Not routinely coded in outpatients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See refusal notice attached. 9. how many were referred for treatment - See refusal notice attached. 10. how many referrals rejected - See refusal notice attached. 11. how many referrals were accepted - See refusal notice attached. 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - See refusal notice attached. | |
| Question Number 10: For the condition or probable/ suspected condition of: x) Bodily distress disorder Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 10: 1. clinical guidance - none 2. policy - none 3. procedure - none 4. diagnostic pathway - depends on symptoms and presentation. Bodily distress disorder is a Psychiatric diagnosis so wouldn't normally be made by a general Paediatrician (we might use the term medically unexplained symptoms for a similar patient group) 5. treatment pathways - Paediatrician to treat anything that requires treatment and PCAMHS to treat any underlying distress. 6. management pathway - Paediatrician to treat anything that requires treatment and PCAMHS to treat any underlying distress 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Depends on symptoms and presentation. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - see attached refusal notice 9. how many were referred for treatment - see attached refusal notice 10. how many referrals rejected - see attached refusal notice 11. how many referrals were accepted - see attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - see attached refusal notice | |
| Question Number 11: For the condition or probable/ suspected condition of: xi) Autoimmune encephalitis with an idiopathic cause Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 11: 1. clinical guidance - Would use guidelines from Paediatric Innovation, Education and Research Network - PIER Network Homepage neurology section. https://www.piernetwork.org/ 2. policy - none 3. procedure - none 4. diagnostic pathway - Depends on patients presentation. Would usually involve an MRI scan and a discussion with Paediatric Neurology. 5. treatment pathways - Depends on patients presentation and cause. Usually this would be an inpatient and may be transferred to tertiary Neurology Centre after discussion. 6. management pathway - Depends on patients presentation and cause. Usually this would be an inpatient and may be transferred to tertiary Neurology Centre after discussion. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - ICD 11 codes not currently used - ICD 10 codes (which are currently used) are as follows: Autoimmune encephalitis – G04.8 or G05.8* if the autoimmune condition is known 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See attached refusal notice 9. how many were referred for treatment - See attached refusal notice 10. how many referrals rejected - See attached refusal notice 11. how many referrals were accepted - See attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - See attached refusal notice | |
| Question Number 12: For the condition or probable/ suspected condition of: xii) Idiopathic transverse myelitis Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 12: 1. clinical guidance - Would use guidelines from Paediatric Innovation, Education and Research Network - PIER Network Homepage neurology section. https://www.piernetwork.org/ 2. policy - none 3. procedure - none 4. diagnostic pathway - Depends on patients presentation. Would usually involve an MRI scan and a discussion with Paediatric Neurology. 5. treatment pathways - Depends on patients presentation and cause. Usually this would be an inpatient and may be transferred to tertiary Neurology Centre after discussion. 6. management pathway - Depends on patients presentation and cause. Usually this would be an inpatient and may be transferred to tertiary Neurology Centre after discussion. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - ICD 11 codes not currently used - ICD 10 codes (which are currently used) are as follows: Transverse myelitis - G37.3 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - See attached refusal notice 9. how many were referred for treatment - See attached refusal notice 10. how many referrals rejected - See attached refusal notice 11. how many referrals were accepted - See attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - See attached refusal notice | |
| Question Number 13: For the condition or probable/ suspected condition of: xiii) Immune dysregulation Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 13: 1. clinical guidance - none 2. policy - none 3. procedure - none 4. diagnostic pathway - Usually would involve referral from primary care to Paediatrics and discussion/liaison with Immunologist depending on patient presentation and underlying cause. 5. treatment pathways - Usually would involve referral from primary care to Paediatrics and discussion/liaison with Immunologist depending on patient presentation and underlying cause. 6. management pathway - Usually would involve referral from primary care to Paediatrics and discussion/liaison with Immunologist depending on patient presentation and underlying cause. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Not routinely coded. Depends on cause. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - see attached refusal notice 9. how many were referred for treatment - see attached refusal notice 10. how many referrals rejected - see attached refusal notice 11. how many referrals were accepted - see attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - see attached refusal notice | |
| Question Number 14: For the condition or probable/ suspected condition of: xiv) Psychiatric disorder Please can you provide the information in questions below: 1. clinical guidance 2. policy 3. procedure 4. diagnostic pathway 5. treatment pathways 6. management pathway 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. 9. how many were referred for treatment 10. how many referrals rejected 11. how many referrals were accepted 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? | |
| Answer To Question 14: 1. clinical guidance - depends on symptoms 2. policy - depends on symptoms 3. procedure - depends on symptoms 4. diagnostic pathway - depends on symptoms. Lead by CAMHS. Joint working with Paediatrics if they are acutely unwell enough to require inpatient care on a general Paediatric ward. 5. treatment pathways - depends on symptoms. Lead by CAMHS. Joint working with Paediatrics if they are acutely unwell enough to require inpatient care on a general Paediatric ward. 6. management pathway - depends on symptoms. Lead by CAMHS. Joint working with Paediatrics if they are acutely unwell enough to require inpatient care on a general Paediatric ward. 7. the clinical classification ICD-11 code or the code which would have traditionally been used if there is an absence of code in paediatric patients. - Depends on symptoms 8. the number of paediatric patients presenting with these conditions for each year for the past 5 years. - see attached refusal notice 9. how many were referred for treatment - see attached refusal notice 10. how many referrals rejected - see attached refusal notice 11. how many referrals were accepted - see attached refusal notice 12. how many patients were referred to another service outside of the trust. Please could this be provided in a table format? - see attached refusal notice | |
| Question Number 15: Please could you provide any minutes of meetings which decided how patients are treated following the British Paediatric Neurology Association Consensus Statement dated April 2021 and details of any changes in how the trust treated or diagnosed patients following this statement along with details of who made the decision to implement any changes. | |
| Answer To Question 15: Not formally discussed - no minutes. | |
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