Department of Health
Central Government
Action Planned
NHS Improvement is appointing a Clinical Lead for diabetes inpatient care to review insulin pumps and current support for users, with the review expected to be completed in late 2018. The Department of Health is also working to reduce variation in diabetes management and care by 2020, with £40 million in additional funding. (AI summary)
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From Nicola Blackwood MP Parliamentary Under Secretary of State for Public Health and Innovation Department of Health Richmond House 79 Whitehall London SWIA 2NS Our Ref: PFD-1074069 020 7210 4850 Simon Nelson HM Senior Coroner HM Coroner’s Court The Phoenix Centre L/Cpl Stephen Shaw MC Way Heywood 19 APR 2017 OL1O 1LR Thank you for your letter of 9 February 2017 to the Secretary of State for Health about the death of Miss Natalie Thornton. I am responding as the Minister with responsibility for diabetes at the Department of Health. I was saddened to read of the circumstances surrounding Miss Thornton’s death. Please pass my condolences to her family and loved ones. Your report explained that Miss Thornton, who had type 1 diabetes, had begun insulin pump therapy several weeks before her death. At inquest, concerns were expressed about the adequacy of the monitoring and analysis of the trends from the data generated following initial use of the pump, and the lack of a formal pump agreement. My officials have sought advice from NHS England, NHS Improvement and the National Institute for Health and Care Excellence (NICE) with regard to the level of support for insulin pump users nationally, and whether the need for consistency and minimum standards should be addressed by regional centres of excellence. It may be helpful if I explain what guidance is available on the use and management of insulin pumps for people with diabetes. NICE advises that it published clinical guideline, ‘Type 1 diabetes in adults: diagnosis and management’ (NG17) in August
2016. www.nice.org.uk/guidance/ng17. This includes recommendations on insulin pumps that were incorporated from the technology appraisal, ‘C’ontinuous subcutaneous insulin infusionfor the treatment of
diabetes mellitus’ (TA151), published in July 2008.
The guidance includes the following: ‘1.3 It is recommended that CSII therapy be initiated only by a trained specialist team, which should normally comprise a physician with a specialist interest in insulin pump therapy, a diabetes specialist nurse and a dietitian. Specialist teams should provide structured education programmes and advice on diet, lifestyle and exercise appropriate for people using CSII.
1.4 Following initiation in adults and children 12 years and older, CSII therapy should only be continued if it results in a sustained improvement in glycaemic control, evidenced by a fall in HbAlc levels, or a sustained decrease in the rate of hypoglycaemic episodes. Appropriate targets for such improvements should be set by the responsible physician, in discussion with the person receiving the treatment or their carer.’ The guidance does not make specific recommendations on support for insulin pump users. However, there are general recommendations in the guideline on early care plans, support and individualised care, as well as education and information provision for people with type 1 diabetes, which applies to pump users and non-pump users alike. NICE advises that there are no plans to review the guidance at this time. However, NICE will retain information on the concerns highlighted in your Report for consideration when the guidance is next considered for review. You ask the Department to consider whether the need for consistency and minimum standards for insulin pump users would be addressed by the establishment of regional centres of excellence. NHS England advises that such a move would be a significant undertaking, involving infrastructure and workforce changes and financial investment, and there is need initially to understand better the extent of variation. NHS England is currently in discussion with NHS Digital about a possible extension of the National Diabetes Audit to include a spotlight audit on accessibility and outcomes of treatment using an insulin pump and continuous glucose monitoring. If the proposal for a spotlight audit is agreed, NHS England would be in a position to better assess the extent to which there is variation in standards of care for insulin pump users.
Department of Health You will appreciate this work is at an early stage but I hope you are assured that action is underway to gain a better understanding of the extent of variation across the country in this specific area of diabetes care. In addition, NHS Improvement advises that it is in the process of appointing a Clinical Lead for diabetes inpatient care for the Getting it Right First Time programme, www.improvernent.nhs .uk/news-alerts/getting-it-right-first-time recruits-new-clinical-leads/. It is expected that the Clinical Lead will be in post within the next four months. The Clinical Lead will undertake a review of insulin pumps and the current support for users, which is expected to be completed towards the latter part of 2018. NHS Improvement is able to update you on the outcomes of this review in due course if that would be helpful. Finally, I would like to assure you that we are working hard to improve outcomes and quality of life for those living with diabetes or those who will develop it in the coming years. Once a patient has been diagnosed with diabetes, it is vital to ensure they can manage their condition as effectively as possible. We have made achieving a measurable reduction in variation in the management and care of people with diabetes by 2020 a mandate objective for the NHS within the lifetime of this Parliament. Building on its National Diabetes Prevention Programme, NHS England is developing a diabetes management and care programme aimed at reducing variation and improving outcomes for people with diabetes. NHS England is making an additional £40 million available from 20 17/18 to support delivery of the programme which will focus on four areas: reducing variation in the achievement of the three NICE treatment targets; improving take up of structured education; improving access to multi-disciplinary foot care teams for people with diabetic foot disease; and improving access to specialist inpatient support. Thank you for bringing the circumstances of Miss Thornton’s death to our attention. I hope this information is useful. NICOLA BLACKWOOD
2016. www.nice.org.uk/guidance/ng17. This includes recommendations on insulin pumps that were incorporated from the technology appraisal, ‘C’ontinuous subcutaneous insulin infusionfor the treatment of
diabetes mellitus’ (TA151), published in July 2008.
The guidance includes the following: ‘1.3 It is recommended that CSII therapy be initiated only by a trained specialist team, which should normally comprise a physician with a specialist interest in insulin pump therapy, a diabetes specialist nurse and a dietitian. Specialist teams should provide structured education programmes and advice on diet, lifestyle and exercise appropriate for people using CSII.
1.4 Following initiation in adults and children 12 years and older, CSII therapy should only be continued if it results in a sustained improvement in glycaemic control, evidenced by a fall in HbAlc levels, or a sustained decrease in the rate of hypoglycaemic episodes. Appropriate targets for such improvements should be set by the responsible physician, in discussion with the person receiving the treatment or their carer.’ The guidance does not make specific recommendations on support for insulin pump users. However, there are general recommendations in the guideline on early care plans, support and individualised care, as well as education and information provision for people with type 1 diabetes, which applies to pump users and non-pump users alike. NICE advises that there are no plans to review the guidance at this time. However, NICE will retain information on the concerns highlighted in your Report for consideration when the guidance is next considered for review. You ask the Department to consider whether the need for consistency and minimum standards for insulin pump users would be addressed by the establishment of regional centres of excellence. NHS England advises that such a move would be a significant undertaking, involving infrastructure and workforce changes and financial investment, and there is need initially to understand better the extent of variation. NHS England is currently in discussion with NHS Digital about a possible extension of the National Diabetes Audit to include a spotlight audit on accessibility and outcomes of treatment using an insulin pump and continuous glucose monitoring. If the proposal for a spotlight audit is agreed, NHS England would be in a position to better assess the extent to which there is variation in standards of care for insulin pump users.
Department of Health You will appreciate this work is at an early stage but I hope you are assured that action is underway to gain a better understanding of the extent of variation across the country in this specific area of diabetes care. In addition, NHS Improvement advises that it is in the process of appointing a Clinical Lead for diabetes inpatient care for the Getting it Right First Time programme, www.improvernent.nhs .uk/news-alerts/getting-it-right-first-time recruits-new-clinical-leads/. It is expected that the Clinical Lead will be in post within the next four months. The Clinical Lead will undertake a review of insulin pumps and the current support for users, which is expected to be completed towards the latter part of 2018. NHS Improvement is able to update you on the outcomes of this review in due course if that would be helpful. Finally, I would like to assure you that we are working hard to improve outcomes and quality of life for those living with diabetes or those who will develop it in the coming years. Once a patient has been diagnosed with diabetes, it is vital to ensure they can manage their condition as effectively as possible. We have made achieving a measurable reduction in variation in the management and care of people with diabetes by 2020 a mandate objective for the NHS within the lifetime of this Parliament. Building on its National Diabetes Prevention Programme, NHS England is developing a diabetes management and care programme aimed at reducing variation and improving outcomes for people with diabetes. NHS England is making an additional £40 million available from 20 17/18 to support delivery of the programme which will focus on four areas: reducing variation in the achievement of the three NICE treatment targets; improving take up of structured education; improving access to multi-disciplinary foot care teams for people with diabetic foot disease; and improving access to specialist inpatient support. Thank you for bringing the circumstances of Miss Thornton’s death to our attention. I hope this information is useful. NICOLA BLACKWOOD