11 July 2019

Specialist Haemoglobinopathy Services

Specialist Haemoglobinopathy Services
NHS England 11 July 2019
  • These service specifications cover haemoglobinopathy coordinating centres and specialist haemoglobinopathy teams to support the provision of specialist and non-specialist haemoglobinopathy services to adults and children and to provide expert opinion and management for complex patients.

National Bowel Cancer Audit Short Report – End of Life

National Bowel Cancer Audit Short Report – End of Life
HQIP 11 July 2019
  • Patients are defined as approaching the ‘end of life’ when they are identified as being likely to die within 12 months. Concerns have been raised about the variation in the quality of end of life care received by patients, with several reports highlighting poor care. This short report aimed to look at patients diagnosed with colorectal cancer who were at the ‘end of life’.
  • As expected, patients who did not live for more than a year from diagnosis tended to be older, have metastases, have poorer performance status, and to undergo no surgical procedure. 
  • However, what was not known was that these patients had, on average, two hospital admissions with a length of stay of 18 days each and that a third spent over a month of their last year in hospital. 
  • 86% of those who lived for less than one year had at least one emergency hospital admission and, if  that admission was in their last month, nearly two thirds died in hospital.
  • Of concern, patients with higher levels of deprivation appear to be more likely to die within 12 months of diagnosis, despite adjustment for other factors. This suggests that there may be some inequalities in access to colorectal cancer care services.

10 July 2019

Sarcoma Services (all ages)

Sarcoma Services (all ages)
NHS England 10 July 2019
  • This service specification covers the provision of care for people with sarcoma cancer, including bone sarcoma, soft tissue sarcoma and gastrointestinal stromal sarcomas.

NHS insert - rare disease "alert card"

NHS insert
Extract from: We need national debate on rare diseases to offer the best possible care
Speech by Baroness Blackwood at the British Paediatric Surveillance Unit rare disease summer tea party at the Royal College of Paediatrics and Child Health, 10 July 2019
NHS Insert
"Another very exciting initiative I want to share with you is the NHS insert, which I announced in February and the NHS are now implementing. The insert gives NHS England a way to hold providers to account and improve services for rare diseases. I have met with NHS England just this week, who have assured me that the insert has been included and will be monitored through the Quality Surveillance Systems, with trusts reporting on it for the first time this September.

There will be up to 3 criteria providers report on:

  • care co-ordination
  • an alert card
  • transition

Let me explain these each in turn.

Firstly, the provider must ensure that there is a person responsible for co-ordinating the care of any patient with a rare disease. Secondly, the provider must give every patient with a rare disease an ‘alert card’. This will include information about their condition, treatment regime and contact details for the individual expert involved in their care. Finally, the provider must ensure that every child has an active transition to an appropriate adult service, even if that adult service is not the commissioning responsibility of NHS England."

Implementation Plan for the UK Strategy for Rare Diseases, NHS England January 2018
"We will develop [2017/18] and implement [2018/19] a rare disease ‘insert’. This will be a set of criteria that will sit alongside those NHS England service specifications (see enablers) for services that treat patients with rare diseases. "

4 July 2019

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study
The Lancet Child & Adolescent Health 4 July 2019 DOI: https://doi.org/10.1016/S2352-4642(19)30201-9
  • An investigation into the association between quality of care quality and outcomes among children and young people with epilepsies in England concludes that 
    • among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care is associated with decreased all-cause mortality in the period after transition to adult services. 
    • Reduced access to an epilepsy specialist nurse was associated with an increase in paediatric epilepsy admissions.
  • Data:  Epilepsy12 national clinical audit, death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics.
  • Nuffield Trust blog: Invest early: how to improve the health of young adults with epilepsy

1 July 2019

ACE MDC project approaches to understanding pathway cost

ACE MDC project approaches to understanding pathway cost
Cancer Research UK, July 2019
  • As part of Wave 2 of the ACE Programme, five projects across England tested the viability of the Multidisciplinary Diagnostic Centre (MDC) model as an approach to improving outcomes for patients presenting with non-specific but concerning symptoms. This article addresses the challenges associated with achieving a full and rigorous evaluation of MDC cost effectiveness, before describing some of the practical approaches employed at a project level to understand pathway cost.