27 September 2018
On 3 October 2018, the Assembly will debate the Petitions Committee’s report on petition P-04-682 Routine screening for type 1 diabetes in children and young people.
The petition was received following the death of 13 year old Peter Baldwin. Peter died in January 2015 as a result of diabetic ketoacidosis arising from undiagnosed type 1 diabetes.
It’s important to note that, while the title of the petition refers to ‘routine screening’ for type 1 diabetes, the petitioner’s main aim – and the focus of the Committee’s recommendations – is to improve early diagnosis of the condition.
The need for early identification of type 1 diabetes
Type 1 diabetes is an autoimmune condition where the pancreas doesn’t produce any insulin. Unlike type 2 diabetes, it is not linked to lifestyle factors and is not preventable. Although most commonly diagnosed under the age of 15, type 1 diabetes can occur at any age.
Type 1 is far less common than type 2 diabetes – and may therefore be less likely to be on a GP’s radar – however it is one of the most common chronic diseases in childhood. There are around 1,400 children with type 1 diabetes in Wales. Incidence of type 1 is increasing by about 4% each year, and rising more rapidly in children under five.
The symptoms of type 1 diabetes can develop very quickly (over a few days or weeks). Diagnosis of type 1 diabetes and initiation of treatment is considered a medical emergency, and the speed of response required is very different to that for type 2 diabetes.
Diabetic ketoacidosis (DKA) is a potentially fatal condition which can develop if diabetes is not detected and treated at an early enough stage. Around a quarter of cases of type 1 diabetes are not diagnosed until the child is in DKA. DKA requires intensive medical intervention, is traumatising for the child, and may have a long-term adverse effect on their diabetes control. It is the most common cause of death in children with diabetes.
The Committee’s consideration of the petition
The Petitions Committee sought evidence from a range of stakeholders to inform its consideration of the petition, including detailed information from all health boards in Wales and relevant professional bodies.
The Petitions Committee has liaised with the Health, Social Care and Sport Committee, which itself requested evidence from the Children and Young People’s Wales Diabetes Network (PDF, 468KB) about action to improve outcomes for children and young people with type 1 diabetes in Wales.
In July 2017 the Petitions Committee held an evidence session with Beth Baldwin, the petitioner, and representatives from Diabetes UK/Diabetes UK Cymru. The petitioner and Diabetes UK highlighted the need for:
- greater awareness of type 1 diabetes signs/symptoms – and the urgency of testing – among GPs and other healthcare professionals, and also among the public;
- a focus on the ‘four Ts’ questions when an unwell child presents in primary care. The Four Ts relate to the most common symptoms of type 1 diabetes – toilet, thirsty, tired, thinner;
- assurance that appropriate blood glucose testing equipment is available in all GP practices, and that all relevant professionals are confident in using it and in interpreting results;
- a greater Welsh Government commitment to drive this agenda forward.
In February 2018, the Cabinet Secretary for Health, Well-being and Sport appeared before the Committee to answer questions on the issues raised in the petition and during the Committee’s evidence-gathering.
The Petitions Committee published its report on 13 July 2018 (PDF, 771KB). In line with the petitioner’s calls for action, the Committee recommended that questions about the ‘four Ts’ symptoms of type 1 diabetes should be routinely asked when unwell children and young people present in primary care, and that appropriate testing (e.g. finger prick blood glucose testing) is carried out immediately when symptoms which could be indicative of type 1 diabetes are present. It also recommended that the Welsh Government should ensure that NICE guidance on diagnosis of type 1 diabetes is consistently implemented across Wales, including that suspected cases are always immediately referred to specialist care. Further recommendations cover:
- ensuring that that appropriate blood glucose testing equipment is available in all relevant primary care settings;
- training for GPs and other healthcare professionals;
- national rollout of a referral pathway for primary care;
- monitoring improvement in diagnosis of type 1 diabetes;
- ensuring learning from case reviews is shared;
- provision of information about type 1 diabetes signs/symptoms to the general public;
- promotion of Diabetes UK’s four Ts campaign.
The Welsh Government’s response
The Welsh Government has accepted all the Petitions Committee’s recommendations, albeit some of these ‘in principle’. The Government accepted in principle the Committee’s key recommendation 1 (that the ‘four Ts’ symptoms should be routinely asked about), but in its response highlighted that the NICE clinical guidance does not state that all unwell children should be asked about the symptoms of type 1 diabetes. The Welsh Government said:
Clinicians must use their discretion, based on their training and available guidance, to guide investigations of unwell children.
The focus on the ‘four Ts’ questions during GP consultations was a key point for the Committee however, particularly given the background to the petition which describes how, in the case of Peter Baldwin, early opportunities to identify type 1 diabetes in primary care were missed.
In response to a specific recommendation about GPs’ ability to access blood glucose testing equipment (recommendation 3), the Welsh Government stated that it would seek assurance about the availability of blood glucose meters in primary care settings.
A key development during the Committee’s consideration of the petition was the piloting of a type 1 diabetes referral pathway (PDF, 122KB) for primary care, led by the Children and Young People Wales Diabetes Network. The pathway is intended to complement Diabetes UK Cymru’s four Ts awareness campaign Know Type 1. The Welsh Government’s response to the Committee confirms that the pathway has now been rolled out to all health boards in Wales.
Taken together, the Petitions Committee’s recommendations aim to increase awareness of type 1 diabetes among healthcare professionals and the wider public, and to ensure that key opportunities to identify and treat the condition at an early stage are not lost. Given the Welsh Government’s positive response to the Committee’s report, and its assurances about work already underway to improve early diagnosis of type 1 diabetes in Wales, stakeholders will undoubtedly be keen to see that the Welsh Government can demonstrate evidence of progress in the areas for action identified by the Committee.
Article by Philippa Watkins, National Assembly for Wales Research Service