Update: Purdah

From close of business Tuesday 3rd of May to the morning of Friday 9th of June, the APPG for Diabetes technically cease to exist as Parliament will be dissolved. Please be aware All-Party Parliamentary Groups must not be active during this period per rules of Parliament. There will be no events, research or communication through e-mail, website or social media. The Group will reform after the elections.


Minutes: The Future of Inpatient Diabetes Care

On Wednesday 19 April, the All-Party Parliamentary Group for Diabetes had a meeting on The Future of Inpatient Diabetes Care. The meeting was chaired by the Rt Hon Keith Vaz MP and had the presence of Jim Shannon MP and Mary Glindon MP.

Right now, one in six hospital beds is occupied by a person with diabetes. Because of poor management and a lack of training for staff about how to care for people with diabetes, a large number of these patients develop complications whilst in hospital that can lead to a longer length of stay. Despite areas of improvement, medication errors are still common and there is a need to improve staffing levels and patient experiences.

The APPG heard from experts in the field on why change is needed, the challenges remaining and potential solutions to improve inpatient diabetes care. The meeting focused on the measures hospitals should adopt to improve the experience of people with diabetes in hospital.

1. Lesley Doherty, patient voice, Cheshire (East)


Lesley has Type 1 Diabetes and she shared the positive and negative experiences she has had with inpatient diabetes care. She has been admitted twice at the same hospital, once for colon surgery and another for orthopaedic surgery, and experienced a varied range of quality of inpatient diabetes care.

For her colon surgery, she stated the pre-assessment was excellent. The nurse contacted the Diabetes Specialist Nurse (DSN) for advice on insulin and its effects on anaesthetics. Lesley was fully informed about insulin management prior to the operation, on what to expect during the post op and after the discharge. She was given a direct line for emergency care and advice, received dietary management on how to optimise her dietary intake post and after surgery, and received guidance on the procedures for admission and recovery at the general ward.

This was the opposite of what happened during pre-assessment for her orthopaedic surgery. The operative procedures were discussed, however the nurse was unable to offer any advice on diabetes care, the DSN was not available and she was not offered a contact number.

“I was shocked that the same hospital could get care so right in one department but so wrong in another. If this had been my first experience of hospital care I would be very afraid.”

Gladly, Lesley stated that for both times the care during surgery was excellent. She was allowed to store her medication and food/drink supplies at an accessible place, her blood glucose (BG) was checked and the insulin infusion drip adjusted accordingly. She was questioned about her feet and any bed sores.

“I felt confident in the hospital team. Confident that all my healthcare needs were fully understood and I would be well cared both during and after the operation. I also felt confident that if surgery presented any complications these would be satisfactory managed and I would be kept safe.”

Unfortunately, the same excellent care was not continued during the night or the weekend. In one evening, she started feeling her BG levels dropping and could hear the alarm on the insulin infusion drip, but was unable to find a nurse to help her. By the time a competent nurse reached her, her BG levels were down to 1.7 and she was in need of rescue. This was fixed during the morning by removing the insulin infusion drip and allowing her to self-manage her own diabetes. However, during the weekend, the ward was staffed and the only nurse was often not available. She asked her consultant if she could be discharged as she was worried about what would happen to her if she suffered another hypo. “I felt fearful for any future long term hospital stays and frustrated that a medical emergency could easily been avoided”, said Lesley.

2. Prof Mike Sampson, Chair, JBDS-IP


Prof Mike Sampson started by covering the role and plans of the UK Joint British Diabetes Societies for Inpatient diabetes care (JBDS-IP), which he chairs. The JBDS-IP started in 2011 as a collaboration between Diabetes UK, the UK Diabetes Inpatient specialist nurse (DISN) group, the UK diabetes specialist diabetologist group (ABCD) and colleagues with the objective of supporting the development of safe and effective inpatient diabetes services.

He complimented the work of the National Diabetes Inpatient Audit (NaDIA) in providing clear recognition of the scale of the problem with inpatient diabetes care, but wondered: “how this knowledge can be translated into improvements?” He raised the issue of Acute Trusts and how they need to be persuaded of the scale of the inpatient diabetes problem and convinced to take it seriously.

In order to address this, he shared how since 2014 JBDS has had multiple discussions with the Care Quality Commission (CQC) national leadership. As a result, in 2015/2016 inpatient diabetes became recognised as one of the few disease specific areas in a CQC Acute Trust inspection and inpatient diabetes is integrated into most stages of a CQC Acute Trust inspection.

“The process may nudge Acute Trusts to focus more on inpatient diabetes care, remove obstacles to better care, and may identify Trusts where there is as particular problem with inpatient care. The CQC has a key role in highlighting inpatient diabetes.”

The next steps for JBDS will be to build on the current inclusion by ensuring the current inpatient diabetes inspection framework works well and to develop an additional service inspection framework for focused CQC inspections, which can be used for a specific trust where CQC have concerns.

3. Gerry Rayman, Lead, National Inpatient Diabetes Audit


Gerry Rayman spoke next about the National Inpatient Diabetes Audit (NaDIA). Gerry shared how he came up with the idea of NaDIA in 2008 due to the need to know what was going on with inpatient diabetes care. When he proposed it, a lot of people told him it would not be possible. However, with an extraordinary commitment from inpatient diabetes teams, the audit is now a success.

He started by sharing the findings of the 2016 audit. There has been some encouraging improvements over previous years, but it clear there is still a big problem, especially with people on insulin. He talked about how 2% of inpatients with diabetes have suffered a severe hypoglycaemia and were in need to be rescued due to high management errors. He explained how despite prevalence of hypoglycaemic episodes declining in hospitals, Diabetes KetoAcidosis (DKA) still happens as 140,000 hypo events every year. Sadly, it is still dangerous going to hospital if you have diabetes. The other area of harm Gerry has focused on were on inpatients with diabetes acquiring foot disease while in hospital. There are 200 cases a year of foot disease.

“It is too much. Because of bad care, people with diabetes can die in hospital.”

Gerry said the way forward involves investing on the people who deliver the care. He talked about the importance of dedicated diabetes inpatient teams and the need for these teams to work together with hospital management to implement hospital-wide safety practices. He stated that inpatient diabetes care needs to be a safety issue.

“We need a commitment and a concerted effort made now, across all hospitals, driven forward by hospital leaders including both managers and clinicians, to provide a high level of care for inpatients with diabetes.”

4. Dr Mayank Patel, Consultant Diabetologist, University Hospital Southampton


Dr Mayank Patel spoke next on the novel inpatient initiatives being used to improve and transform inpatient care in Southampton. Each day, 1 in 5 adult inpatients in his trust has diabetes (200 patients). He shared how the Multidisciplinary Diabetes Outreach Team (doctors, specialist nurses, dieticians and a pharmacist) is not able to review all patients daily; also, as the vast majority of these patients have not been admitted primarily due to diabetes, they are not under the care of a specialist diabetes team.

To address this, his team developed in 2011 a series of processes to support the care for patients with diabetes. The processes involve the development of a hospital menu (with carbohydrate content), a Diabetic KetoAcidosis (DKA) careplan booklet, plus different strategies in education and technology integration to support their staff in providing effective diabetes care.

“In our trust, as nationally, many staff do not feel confident in managing diabetes. Part of my team’s role is in delivering staff training. All members of the team contribute.”

Some of the educational examples include a Diabetes Education evening for junior doctors, an Inpatient Diabetes study day for nursing staff, and diabetes ward rounds for final year medical students. After a healthcare professional is involved in insulin errors, they also conduct a reflective meeting. All strategies exceled in increasing confidence in doctors and nurses.

His team has also developed an inpatient diabetes e-learning tool and uses smartphones applications to support clinical diabetes care, either through the development of a free app (DiAppbetes) that works as a pocket book of diabetes advice, or another app (Southampton Tool for Action on Glucose), which acts as a decision support tool. Together, this has contributed to reducing clinical diabetes errors, reducing length of stay and increased patient and staff satisfaction with diabetes care.

Moreover, he spoke on the importance of commitment from the medical and nursing ward staff towards patients with diabetes. It is important patients with diabetes are easily identifiable, have their feet assessed within 24 hours, are immediately treated for hypoglycaemia or hyperglycaemia before referring to the specialist team and be supported to self-manage if appropriate.

However, they are not alone in this. Dr Patel highlighted how the diabetes inpatient team must have the commitment to support staff with reviews, material, education and plans. He also shared how a patient also must inform the staff if they need diabetes support, as the patient is better positioned to know what is best for them.

“The patient needs to be listened to and encouraged to speak.”

5. Dr Kath Higgins, Consultant in Diabetes Medicine, University Hospital of Leicester NHS Trust


Dr Kath Higgins spoke next on the initiatives being used to improve and transform care in Leicester. She started by stating there seems to be a widespread institutional acceptance of poor care that needs to be changed. Staff are lacking in knowledge and competence in managing inpatient diabetes care. Patients are often denied the opportunity to manage their own diabetes whilst in hospital. Inpatients with diabetes are at risk of harm.

“For years these issues have been seen as ‘diabetes team problems’ but they are not. This is a whole Trust problem and we will not be able to tackle the harm associated with inpatient diabetes care without engaging whole Trust buy-in.”

Dr Higgins shared how her team in Leicester has approached this issue to achieve change in inpatient diabetes care. It all starts with creating a strategy that is embedded in hospital. For this, her team has developed a Diabetes Inpatient Safety Committee, wrote a strategy document for the safe use of insulin and present it to the Trust executive team. As a result, her team was able to engage the executive team and develop a Trustwide strategy for the safe use of insulin, which is now embedded in the Trust Safety agenda.

She then explained what the strategy for safe use of insulin entails, and it focuses on: education and leadership, improving patient experience, and patient safety.

The strategy to educate healthcare professionals and develop core competencies for staff is about developing influencers of good care, fostering an ethos of championing good practice and challenging poor practice. Dr Higgins said the responsibility for safe and high quality care for inpatients with diabetes falls under each CMG leadership team to implement and monitor, with the support and input of the diabetes team.

To improve patient safety, Kath’s team adopted a systematic approach focused on empowering staff to recognise, challenge and take action to resolve poor practice or patient experience. One of the strategies were through a robust pathway for reviewing diabetes (REACT diabetes) and ‘rapid response’ targeted education with shared learning.

Another strategy was to integrate technology. Her team is looking at developing systems to monitor diabetes harms continuously. One of the systems the Trust has invested in is the NerveCentre, an electronic task management system on to which patient observations can be uploaded electronically. The system can be used for instant messaging of HCP, automatic task generation, immediate alerts, cascading escalations and overdue reminders. It also provides an audit trail with respect to actions taken in response to abnormal parameters. By designing condition specific recommendations and escalations they hope to develop automated algorithms in response to specific scenario, such as hypos or hyperglycaemia.

“As we move forward we are working with the Trust to procure networked blood glucose meters and link these to the NerveCentre system. With this we aim to develop an electronic Inpatient Diabetes Dashboard to allow continuous monitoring and feedback to clinical areas.”

Dr Higgins shared how her next steps will be to ensure this change can occur nationally. She spoke about the need of a national campaign, similar to previous work done in sepsis, with standards all trusts have to sign up to and internal monitoring with feedback to allow interventions and actions to improve care. She mentioned the need to explore a campaign to empower and inform patients, as well as tackling education and upskilling the ever changing junior medical workforce.

“There is no quick fix here. The work is complex, requires time and buy-in from the whole Trust”.

6. Dr Partha Kar, Associate National Clinical Director, Diabetes, NHS England


Finally, Dr Partha Kar provided an update on the NHS England perspective regarding inpatient diabetes care. He focused on the topics of safety and leadership.

He started talking about ‘Getting it right the first time’ (GIRFT), a programme designed to improve clinical quality and efficiency within the NHS by identifying differences in service delivery and encouraging sharing of best practice. He explained diabetes is a newly added speciality area and how the focus of the programme is primarily safety and good patient outcomes. He stated that improving safety and inpatient diabetes in hospital is a priority for the NHS. He mentioned the transformation fund that was available to those interested in improving inpatient diabetes errors, and hoped the announcement includes many quality inpatient care programs. However, for Dr Par this is not enough.

“How can you keep inpatient diabetes patients safe? There’s no amount of money that will improve diabetes in hospital. It takes leadership and help from the people on the ground.”

He complimented the National Diabetes Inpatient Audit (NaDIA) and Gerry Rayman for helping the NHS to get the data of what actually goes in hospitals. He spoke on how, despite improvements and commitment from the NHS, inpatient diabetes issues continue to be a major issue to tackle. About 1 in 25 patients with Type 1 diabetes go into DKA while in hospitals because of not being given insulin. “This must and will change”, he said.

Dr Kar said every acute hospital in England should have an inpatient diabetes team, especially a Diabetes Inpatient Specialist Nurse (DISN), in order to improve inpatient diabetes care. He talked about the role of the inpatient diabetes specialist as an educator and support for other staff, whether the specialist concerned is a doctor or nurse. He also said specialists are spokespersons for patients. Partha said that there is a need for a relationship between CCGs, primary and specialists. For Dr Kar, this collaboration on the ground between specialist and generalist teams will be the key to change. When that relationship is there, good inpatient diabetes care happens.

To Dr Kar, it is possible to deliver care for all people with diabetes in a more effective and cost-effective way. But to do it, it requires strong clinical leadership and he complimented the work of Dr Patel and Dr Higgins in doing just that. He said it takes good leadership and a desire to improve on what we have, not rely on others to do so.

7. Questions and Group Discussion


After the speeches, Mr. Vaz opened the floor for questions. First to raise an issue was Jim Shannon MP. Mr Shannon spoke about the need for a United Kingdom strategy to fight diabetes. He shared how Ireland has the largest prevalence of Type 1 diabetes and said it is time all nations come together. He stated he wants to work better together with England on a national strategy for education and awareness raising.

Dr Jonathan Valabhji spoke next on the importance to reflect on the positive improvements in inpatient diabetes as well. He explained how while there are more people, and older people with diabetes in hospital, this is partly explained by the fact people with diabetes are being able to live longer lives. He said not every change will happen immediately or tomorrow, but the NHS is doing what they can.

Mr. Vaz finished the meeting by thanking all the guests and speakers. He said our expertise is the envy of the work and commented how all the evidence received orally and in written form will be part of a report to be published soon.


Report: Safety and Inclusion of Children with Medical Conditions at School

The APPG for Diabetes and the APPG on Epilepsy held a joint evidence session at the House of Commons on Wednesday 1st of March 2017 into the safety and inclusion of children with medical conditions at school.

Evidence was heard from parents Louise Taylor, Sue James and Sara Milocco; Professor Helen Cross, from the Great Ormond Street Hospital; Professor Simon Dyson, from De Montfort University; and Thalie Martini, Chair of the Health Conditions in Schools Alliance. Written evidence and comments were also submitted by over 300 parents, children, schools and healthcare professionals.

The full report can be downloaded here.

The duty to support children with medical conditions is clearly not yet known, understood or implemented by enough schools.

It is not acceptable to expect individual parents to have to advocate and argue for their child’s rights. There is a greater role for the government and education bodies to play to ensure the law is adequately implemented and enforced and that children receive the necessary support.

Schools need to be better informed about what is expected of them, what adjustments are required, and then reassured that the procedures they have put in place are correct.


Weekly diabetes parliamentary round-up

House of Commons Questions

School Milk – DH – Lucy Powell

Thu, 30 March 2017 | House of Commons – Written Answer

Asked by Lucy Powell (Manchester Central) To ask the Secretary of State for Health, what assessment he has made of the role of school and nursery milk in the Government’s Childhood Obesity Plan.

Asked by Lucy Powell (Manchester Central) To ask the Secretary of State for Health, what assessment he has made of the role of school and nursery milk in supporting the health of children in deprived communities.

Answered by: Nicola Blackwood Answered on: 30 March 2017

Where the school food standards apply, milk must be available during school hours and offered free to disadvantaged pupils, and free milk is also available to infants if served as part of their lunch.

As part of the Childhood Obesity Plan, the Government will publish and promote example menus for early year’s settings in England later this year. This will help settings to meet the latest Government dietary recommendations, including the consumption of milk and dairy products.

Health: Children – DH – Jonathan Ashworth

Thu, 30 March 2017 | House of Commons – Written Answer

Asked by Jonathan Ashworth (Leicester South) To ask the Secretary of State for Health, what data his Department and its agencies collect on the effect of childhood health on later life chances.

Answered by: Nicola Blackwood Answered on: 30 March 2017

Public Health England (PHE) track a number of indicators concerning health, wellbeing and behavioural and cognitive outcomes associated with life chances. This is via the Public Health Outcomes Framework and other profiles, in particular the child health profiles and the early years profiles.

These indicators include background factors, such as children in low income families, risk factors, (for example low birthweight at term), and protective factors including breastfeeding initiation. PHE also collect data on early years outcomes via the Ages and Stages questionnaire as well as later childhood outcomes.

There are also indicators on obesity, namely excess weight in four-five and 10-11 year olds. In terms of childhood health and life chances, obese children and adolescents are at an increased risk of developing various health problems (both physical and emotional /psychological), and are also more likely to become obese adults.

In addition, the Department funds longitudinal studies such as the millennium cohort study to track children through childhood and is supporting the roll-out of Routine Enquiry into Adverse Childhood Experiences. This will encourage people to disclose childhood adversity, which can lead to them getting the help they need sooner.

Department of Health – DH – Nic Dakin

Fri, 24 March 2017 | House of Commons – Written Answer

Asked by Nic Dakin (Scunthorpe) To ask the Secretary of State for Health, whether he plans to launch the Daily Mile nationwide in England.

Answered by: Nicola Blackwood Answered on: 24 March 2017

The Chief Medical Officer recommends that all children aged five-18 should get at least 60 minutes of moderate to vigorous physical activity each day.

The Government published a Childhood Obesity Plan for Action in August 2016, which can be accessed here:

This plan states that for all primary school children, at least 30 minutes of physical activity should be delivered in school every day through active break times, Physical Education, extra curricular clubs, active lessons or other sport and physical activity events. Schools have the freedom to decide how to meet this expectation and which programmes, such as The Daily Mile, they choose to adopt.

Primary Education: Sports – DfE – Mr Jim Cunningham

Mon, 27 March 2017 | House of Commons – Written Answer

Asked by Mr Jim Cunningham (Coventry South) To ask the Secretary of State for Education, what estimate her Department has made of the proportion of primary school children who do not receive a minimum of two hours of sport and PE activity each week; and if she will make a statement.

Answered by: Edward Timpson Answered on: 27 March 2017

The Department does not hold that information, as the Government does not set a target for how much curriculum time schools must dedicate to Physical Education (PE) or specify the sports and activities that must be taught in schools.

PE remains a compulsory subject at all four key stages in the national curriculum, and we have given schools the freedom to deliver a diverse and challenging PE curriculum that best suits the needs of their pupils.

The Chief Medical Officer has stated that children should be active for 60 minutes a day (of which 30 minutes should be during school time), and we are supporting this through a number of initiatives, including the primary PE and sport premium.

Since 2013, we have invested over £600 million to improve PE and school sport in primary schools through the primary PE and sport premium. In an independent evaluation, 84% of schools reported an increase in pupil engagement in PE during curricular time and in the levels of participation in extra-curricular activities. Research has also shown that primary schools are on average now delivering almost two hours of PE to pupils each week since the introduction of the premium.

But we know there is more to do, which is why we will also be doubling the premium from £160m to £320m per year from September 2017, using money raised by the sugar soft drinks industry levy.

Soft Drinks: Taxation – HM Treasury – Dr Sarah Wollaston

Fri, 24 March 2017 | House of Commons – Written Answer

Asked by Dr Sarah Wollaston (Totnes) To ask Mr Chancellor of the Exchequer, whether he has assessed the potential merits of using money raised through the Soft Drinks Industry Levy to extend the free school meals scheme to (a) nursery schools and (b) private nurseries; and if he will make a statement.

Asked by Dr Sarah Wollaston (Totnes) To ask Mr Chancellor of the Exchequer, what assessment he has made of the potential merits of using money raised from the Soft Drinks Industry Levy to support (a) nursery schools and (b) private nurseries in accessing the Children’s Food Trust accreditation scheme; and if he will make a statement.

Answered by: Jane Ellison Answered on: 24 March 2017 The Government has already confirmed that, in England, we will invest the £1 billion revenue we originally forecast from the Soft Drinks Industry Levy during this parliament in giving school-aged children a better and healthier future, including through doubling the primary school PE and sport premium and expanding school breakfast clubs. The Secretary of State for Education recently set out further details on this, including £415m for a new healthy pupils capital programme. The Department for Education will set out more detail in due course. Grouped Questions: 68234

MPs debate Preventing Avoidable Sight Loss

Tue, 28 March 2017 | Debate – Adjournment and General

NHS England had opted to allow vision services to be planned and delivered on a local rather than a national basis, MPs heard today.

Responding to a debate on preventing avoidable sight loss, Community Health and Care Minister David Mowat declared it “unacceptable” that 20 people a month were losing their sight due to preventable causes, and said that “we need to work collectively to address it”.

He also acknowledged the pressing character of this issue given the increasing elderly proportion of the population, discussing the significance of improving quality of life for the UK’s expanding population of seniors.

He pointed to the significance of other lifestyle factors, such as smoking and obesity, and noted the importance of the upcoming Tobacco Control Strategy, which would feature specific targets by age group, as well as the existing Obesity Strategy.

Mr Mowat welcomed the impact of the new diabetic eye disease screening programme, which had resulted in “significant progress” in preventing this problem. When it came to other causes, including cataracts, age-related macular degeneration and glaucoma, he also referenced the significance of free sight tests at school and for elderly or high-risk populations.

The minister emphasised that treatment was led by CCGs, and noted significant regional disparities which he said suggested local commissioners in areas with particularly high levels of preventable sight loss ought to take action. He flagged the Public Health Outcomes Framework as a good guide in this respect.

Mr Mowat said that NICE guidelines must militate against any rationing of treatment, and promised to investigate why CCGs were not requiring opticians to refer patients to GPs, who would in turn refer onwards to hospitals and opthalmologists.

Discussing Sustainability and Transformation Plans (STPs), he defended the fact that they did not all address avoidable sight loss by describing them as “a process, not an event”, and called on interested parties to continue lobbying local health leaders.

He also said that the same principles on waiting lists should apply to eye appointments as in other areas of NHS care.

Addressing calls for an eye strategy, he argued that this would not be a “panacea”, as shown by experience in Northern Ireland. “My preference is to work with NHS England and with Health Education England, if it is a question of getting more people into roles and all that goes with that”, he commented.

Responding for the Opposition, Shadow Community Health Minister Julie Cooper declared herself “shocked” at the lack of a national sight loss strategy, and called for health professionals to get better access to data; for local service provision; and for an emphasis on prevention. She also declared that STPs represented an “exciting opportunity” to address these issues.

Opening the debate, Conservative MP Nusrat Ghani highlighted her work on the APPG on Eye Health and Visual Impairment, as supported by the RNIB, and noted the statistic that half of sight loss could potentially be avoided.

She complained about the treatment of an individual who had initially been unable to secure the urgent medical attention she needed to preserve her sight, and lamented that NHS England “does not give eye health the profile it deserves”. She pointed out that sight loss was not subject to an NHS England strategy like those in place for hearing loss and dementia, and also expressed regret that the issue was not referenced in STPs.

She called for some “small changes to guidelines and legislation” such as allowing orthoptists to sign hospital eye service spectacle prescriptions, and pointed to the need for screening of children and efficient referral processes.

Health Committee – Government is missing important opportunities to tackle childhood obesity

Mon, 27 March 2017 | Commons Select Committee Press Release

27 March 2017

The Government needs to take more robust action to tackle the impact of deep discounting and price promotions on the sales of unhealthy food and drink, says the Health Committee in its follow up report into childhood obesity.

Given the amount of our food and drink that is purchased on discounts and promotions, the Committee is urging the Government to follow the evidence-based advice to create “a level playing field”. It was Industry representatives themselves, when giving evidence to the Committee, who explained that the current Government plans risk being undermined unless there is regulation. Retailers who act responsibly on discounting and promotions should not be put at a competitive disadvantage to those who do not.

The Government’s plan to tackle childhood obesity was published in August 2016. Although the Health Committee welcomes the measures the Government has announced on the sugary drinks levy, they are extremely disappointed that several key areas for action that could have made the strategy more effective have not been included.

Chair of the Health Committee, Dr Sarah Wollaston MP, says:

“We are extremely disappointed that the Government has rejected a number of our recommendations. These omissions mean that the current plan misses important opportunities to tackle childhood obesity. Vague statements about seeing how the current plan turns out are inadequate to the seriousness and urgency of this major public health challenge. The Government must set clear goals for reducing overall levels of childhood obesity as well as goals for reducing the unacceptable and widening levels of inequality.”

The Committee also calls on the Government to ensure that manufacturers pass on the cost of the levy to ensure that there is a price differential at the point of sale between high- and low- or no-sugar drinks. The Committee feels that this would enhance the effect of the levy in encouraging low or no sugar choices and that failure to pass on the levy would result in consumers having to cross subsidise high-sugar products.

The Committee has welcomed the tiered levy and recognises that this has already started to drive reformulation and further recommends that it be extended to include milk-based drinks with added sugar.

The report welcomes the Government’s positive response to the Committee’s recommendation that the proceeds of the soft drinks industry levy should be directed towards measures to improve children’s health including through increasing access to school sports and to breakfast clubs. The Committee will follow up how the income from the levy is distributed, including the ways in which this can help to reduce the inequalities arising from childhood obesity.


Report: Industry action on obesity and Type 2 diabetes

The APPG for Diabetes held an evidence session at the House of Commons on Wednesday 18th of January 2017 into industry initiatives to take action on sugar.

Evidence was heard from Mark Saxon, Head of Public Affairs at Coca Cola UK, Will Blomefield, Head of UK Government Relationship at Tesco, Tim Rycroft, Corporate Affairs Director at the Food and Drink Federation (FDF) and Michelle Norman, Head of External Affairs and Dr. Caroline Saunders, Head of Nutrition at Lucozade Ribena Suntory. Written evidence was also submitted to this inquiry by PepsiCo.

The full report can be downloaded here.

As much of the success of the Childhood Obesity Plan depends on the industry’s initiatives, witnesses were clear that there are big limits to what they would be able to do unilaterally. How this will impact the accomplishment of the plan remains to be seen.

The APPG for Diabetes will continue to monitor and comment on this very important area of policy. The next meeting on this topic will be held in October, one year from the Childhood Obesity Plan.


Next APPG meeting: The Future of Inpatient Diabetes Care

In April the APPG for Diabetes will have a meeting on The Future of Inpatient Diabetes Care, Wednesday, 19 April 2017, 5-6:30pm, House of Commons.

Speakers will include:

  • Lesley Doherty, patient voice;
  • Gerry Rayman, Lead of the National Diabetes Inpatient Audit;
  • Dr Mayank Patel, Consultant Diabetologist for the University Hospital of Southampton;
  • Dr Kath Higgins, Consultant in Diabetes Medicine for the University Hospital of Leicester;
  • Prof Mike Sampson, Chair, JBDS
  • Dr Partha Kar, Associate National Clinical Director, Diabetes, NHS England.

Read the full agenda here: APPG for Diabetes Meeting Agenda 19 of April

One in six hospital beds are occupied by a person with diabetes. Because of poor management and a lack of training for staff about how to care for people with diabetes, a large number of these patients develop complications whilst in hospital that can lead to a longer length of stay.

There are however areas of improvement and many examples of good practice to learn from. The latest National Diabetes Inpatient Audit (NaDIA) report has pointed to reductions in the incidence of hypoglycemic episodes and the development of foot ulcers. However, medication errors are still common and there is a need to improve staffing levels and patient experiences.

How can we make sure that these examples of good practice are shared more widely? What measures should hospitals adopt to improve the experience of people with diabetes in hospital? And crucially, what is the future of inpatient diabetes care?

The APPG will hear from healthcare professionals and care providers on the challenges remaining and innovations that have the potential to improve inpatient diabetes care.

If you would like to attend, please RSVP by emailing Due to limits on room capacity, please note that admittance will be on a first come, first served and one organisation, one person basis.

Call for evidence: If you have an opinion, case study or best practice to share, please contribute to our report and send in a written submission to until midnight April 16.


The invisible battle of children with medical conditions and their families

On Wednesday 1 March, the All-Party Parliamentary Group for Diabetes and the All-Party Parliamentary Group for Epilepsy had a joint meeting to hear from parents, researchers, campaigners and healthcare professionals on the Safety and Inclusion of Children with Medical Conditions at School.

The meeting was co-chaired by Keith Vaz MP and Caroline Ansell MP, with the illustrious presence of Liz McInnes MP, George Howarth MP, Victoria Atkins MP, Andy Slaughter MP, Andrew Selous MP, Kevin Hollinrake MP and Baroness Bakewell of Hardington Mandeville.

Powerful testimonies were heard from the speakers and the audience on the challenges facing children with medical conditions at school. The Children and Families Act 2014 included a statutory duty requiring all schools in England to make the right arrangements to support children with medical conditions. However, as the evidence heard showed, the duty is not being implemented effectively, leaving over a million children with medical conditions at risk. The evidence collected will be part of a report.

Read the full minutes here: Minutes for the meeting on the Safety and Inclusion of Children with Medical Conditions at School

1.  Louise Taylor, parent

Louise, parent of a child with Type 1 diabetes, spoke of an unfortunate incident her daughter experienced. Her daughter suffered a dangerous hypoglycaemic attack during a cycling proficiency test. The school’s staff had not checked to make sure her daughter had her ‘hypo kit’ with her, and instead made her walk back to the school. When she finally arrived back to school, she was in a poor state and the school did not know how to help her.

“It is a parent’s worst nightmare to get a call from a school saying their child is seriously ill and they do not know how to help her”, shared Louise. Gladly, Louise was able to go to school to her daughter’s aid. It took a long time to get her daughter’s blood sugars back to a safe level. Not only it was an awful physical experience for her daughter, it was also embarrassing and traumatic. Her daughter is now scared of doing things she enjoys, like sports and extra-curricular activities.

The schools did not have a medical conditions policy in place, and did not know it needed one, by law. When the right procedures are in place, school staff can understand their responsibility in keeping children safe and how to do it. Situations like the one experienced by Louise’s daughter can then be avoided. Without it, children with medical conditions are put in unnecessary danger.

Louise also researched her local area to see how many schools had a medical conditions policy. She found that no school was even aware the duty existed. Because of it, Louise started a petition online to call on government to raise awareness and compliance to the law. She met her MP Andy Slaughter at the meeting and together they plan to raise awareness to the duty in their local area.

2.  Sue James, parent

Sue’ son suffers from chronic migraines, Postural Tachycardia Syndrome, Chronic Fatigue Syndrome and Vitamin D Deficiency. This makes her son’s autonomic nervous system malfunction, giving him dizziness, constant migraines and potentially fainting.

“Schools did not understand his conditions”, said Sue. Her son was not allowed to work in the school’s quiet room because he was told it was not suitable for him. When ill, her son is made to walk four blocks until the first aid room, which puts him at risk of accidents. Once, he was made to walk back home without her knowledge. When she asked for a wheelchair her son could use, the schools’ Headteacher advised her son not to use one, saying it “would not look cool”. When raising a complaint, the school deputy disregarded her son’s condition by stating that when she has a headache she takes over the counter medication and is fine the next day. Sue’s son has had a constant headache for 51 months.

Sue was told her son should only come to school when he is fit for work, and if he could not function in a normal classroom without support he could not attend school.

Despite being rated ‘good’ by OFSTED, the school did not have a medical conditions policy nor an individual healthcare plan in place, to the knowledge of the local authority. It was only implemented after Sue pushed for one. But still, the school refused to hear Sue and the healthcare professional’s suggestions for the plan. “There is a lack of understanding and communication”, said Sue.

Eventually, Sue had to take her son out from school per advisement of the Chronic Fatigue Syndrome team at hospital, as functioning without support in a mainstream school was too much for his health.

3.  Sara Milocco, parent

Sara’s daughter has coeliac disease and needs to follow a gluten free diet to avoid pain, vomiting, lethargy, emotional distress and, in the long term, cancer and osteoporosis. She had been trying to get the school to provide her daughter with gluten free food for years, but never received a response. When the duty came to force, she used it as a leverage to start a conversation, but still faced overwhelming resistance.

“The school still did not see coeliac disease as a medical condition and did not feel they had the obligation and responsibility to support my daughter at school”, said Sara. Even when she tried to compromise and offered to contribute with meals for her daughter, her help was denied as it would isolate the other students who might also want homed cooked meals. Sara’s concerns about the understanding of the catering staff and the risks of contamination were continuously dismissed.

In 2016, her daughter was given a full plate of pasta by the school and assured it was gluten free. It was not, and her daughter vomited it two hours later and had to be sent home in pain. Later, for simplicity, the school subjected her daughter to eat jacket potatoes and beans every day, which is far from a healthy balanced meal. As a result, her daughter’s well-being, concentration and growth was impacted. Sara was advised by her daughter’s doctor to withdraw her daughter from school meals, as her daughter had not grown in height or weight for six months.

“There is a lack of appropriate training, willingness to listen and care”, said Sara. She had to step up her complaints in order to be heard, but it still became her responsibility to raise awareness among school staff on gluten and the risks of contamination. It took Sara’s time, understanding and commitment to make any change happen. “What about parents who do not have the ability or time to bring a similar campaign forward?” she asks, wondering if their children do not deserve the same support. To this date, her daughter’s school still does not have a medical conditions policy in place, despite being rated as ‘outstanding’ by OFSTED.

After the parents spoke, Caroline Ansell MP stated there is a clear lack of compassion and understanding for the needs of children with medical conditions and thanked the parents for sharing their ongoing battles to get their children the support they need in school. She raised the issue of responsibility and asked if any of the parents had contacted their respective Governors. All parents had, none received a positive response. Caroline Ansell MP also empathized with the speakers and raised the issue of how parents can appear “too demanding” when all they want is their right.

George Howarth MP shared his concern about the psychological impact poor care and discrimination can have on children with medical conditions, saying there is a need to address the issue of bullying.

4.  Professor Helen Cross, Great Ormond Street Hospital

Helen started by explaining epilepsy is a condition which is characterised by recurrent seizures. Approximately two thirds of people with epilepsy have their seizures controlled by medication. She said in childhood, epilepsy is more common than diabetes, and there is still an element of stigma attached to epilepsy as many people are unaware of how the condition can affect young people.

“Parents may be aware of difficulties their children are experiencing at school, but many teachers are unaware what they are going through”, said Helen. As a solution, Helen said there is a need to raise awareness in schools and every school should have a medical conditions policy in place.

She explained how children with medical conditions may not want to be labelled at school, such as having photo charts on the wall or needing to go to a specific place if they have a seizure, so it is important to communicate with the parent and the child when building an Individual Healthcare Plan. Helen explained how this may not seem a priority if a young person’s seizures are under control, but Epilepsy may still be affecting their learning. “Every child needs an Individual Healthcare Plan”, said Helen.

Helen also spoke about the need for paediatric specialist nurses and their importance in providing a link for the young person by going into schools. She mentioned how the school nursing provision has unfortunately been reduced. She also called for the need for psychological support, as this is affects many young people with epilepsy, as well as other medical conditions.

Finally, Helen brought up the need to maintain support for children in secondary school. Many secondary schools find that issues affecting young people with medical conditions have not previously been recognised at primary school. She explained how this has a knock-on impact on young people, with some of them being recommended for fewer GCSEs or none. “Children with medical conditions need support at whatever time the condition is recognised”, she said.

5.  Simon Dyson, Professor of Applied Sociology at De Montfort University

Simon Dyson is part of a team of researchers at De Montfort University who report on the experiences of young people with sickle cell disorders (SCD) in the education system. SCD is a complex condition with major symptoms including strokes, silent strokes, chronic pain and acute painful crises. His team surveyed local authorities in England, pupils living with SCD and schools attended by young people with SCD.

He started by sharing some of the experiences he collected showing how children with SCD are not being cared for adequately at school. “In an academy school in England, a young girl with SCD was having a severe painful crisis and was rolling around on the floor in agony while other children film her on their mobile phones. The teacher did not intervene”, said Simon. A majority of children with SCD are prevented from going to the toilet when needed, about half reported not being permitted to drink water, and about a third are made to take unsuitable exercise. Simon explained all of these could trigger a severe sickle cell painful crisis, and all could have been avoided.

To make matters worse, a third of children said they have been called lazy when in fact they are tired from their anaemia. Moreover, parents are being threatened with fines for missed schooling when it is schools who are failing in their duty to include young children with medical conditions and help them catch up on missed work. “Lack of knowledge leads schools to misunderstand children’s accounts and make simple, but dangerous mistakes”, said Simon.

Simon explained how there is a need to raise awareness of the full implications of a condition, not just acknowledging its existence, as awareness without understanding allows children with SCD to became targets of bullying and discrimination. Even so, Simon shared there is evidence that raising teacher awareness is important, it was insufficient to make the difference in school experience. “Teachers are often overloaded and stressed and they need to be supported”, said Simon. It was only a background policy that was able change the social environment of the school and promote school inclusion, detailing procedures in a way that does not require teachers to be specialists of every condition.

However, results from Simon’s research has found that less than 10% of schools had such a policy in place. Furthermore, Simon shed light to the issue of accountability. In his research, only about 13% of local authorities contacted could state how many children under their jurisdiction had an individual healthcare plan or knew how many children with SCD they had in their schools. “At this level, SCD as a potential issue affecting pupils is relatively invisible in education policy terms”, said Simon. He declared OFSTED must be instructed to assess quality of inclusion of pupils with medical conditions as part of school inspections.

Liz McInnes MP agreed with speakers on the importance of supporting children with medical conditions at school, and raised the issue of school nurses. She questioned if this could be the solution to the problem. Simon Dyson responded that, at the moment, there is only about one school nurse for five schools. While it would be helpful to have more nurses, he said “a whole school change is needed”. Schools must change culture to fully include children with medical conditions, must change procedures to prevent them from becoming ill, and every staff should be prepared to help in case of an emergency.

6.  Thalie Martini, Diabetes UK Make the Grade Delivery Manager

Thalie is the chair of the Health Conditions in School Alliance, a group of over 30 organisations working together for the rights of children with medical conditions at school. She talked about how good care and inclusion in school ensures these children are safe and can achieve their academic potential. “Good care can be achieved when clear overarching procedures and policies are in place in schools”, said Thalie. She explained how the new duty in England has the potential to make a significant difference to the lives of over a million children with medical conditions. The problem is that the duty is not being implemented correctly.

She summarized the evidence from the meeting and how it resonates with the evidence collected by the Alliance. Parents from across health conditions are concerned for their child’s safety due to their necessary day to day management, fear their child will be excluded or put at a disadvantage because of their condition, and worry about school staff not being properly informed to know what to do to prevent their child becoming ill or excluded, or help in case of an emergency.

Thalie shared the results of two Freedom of Information (FOI) investigations conducted by the Alliance. In 2015 and in 2017 less than 12% of schools demonstrated statutory arrangements were in place to support children with medical conditions. As the causes for the poor implementation, the Alliance found that ‘lack of confidence’ and ‘fear of not knowing what to do’ were the main issues declared by schools. While most might be aware of the legislation, they do not understand it and know what is required of them. “There is limited support for schools”, said Thalie, “and it is unclear how the Department of Education is supporting them”. She shared how, through her experience with Diabetes UK Make the Grade Campaign, when schools have the tools to implement the duty correctly good care happens. “Schools need to be informed and supported to implement the duty”, said Thalie.

The issue of accountability was again brought up, with Thalie saying there is also a “limited monitoring of implementation”. Thalie shared the results surveys and investigations conducted by the Alliance, showing that less than 1% of Local Authorities check that schools have implemented the duty and only 27% of schools say OFSTED checked for their medical conditions policies in the last inspection. At this point, the struggles of children with medical conditions and their families remain invisible. “Implementation of the duty must be routinely monitored”, said Thalie. While the statutory guidance states that “inspectors must consider how well a school meets the needs of the full range of pupils, including those with medical conditions”, the OFSTED’s inspection handbook does not reference the statutory guidance.

As a solution, Thalie stated the Department of Education must take action to raise awareness of what is required in schools, and OFSTED must ensure inspectors are trained and equipped to routinely check schools’ medical conditions policies at inspections.

Caroline Ansell MP commented how it is positive to remember good care in school exists, and the importance of sharing good practice between schools. She said to be glad to hear there is a “blueprint” for solving the problems parents had shared. Kevin Hollinrake MP and Andrew Selous MP talked about the importance of raising awareness with schools of good practice and their statutory duty, suggesting a MP toolkit could be helpful to make sure that schools understand their obligations.

7.  Group Discussion

After each of the panel speakers spoke, Keith Vaz MP opened the floor for questions and many guests shared their personal experiences with the group.

One example was Emma Williams, parent of a child with both Type 1 diabetes and coeliac disease. She faced an uphill battle to convince her school the duty was statutory, but even after adopting it her school refuses to follow the agreed healthcare plan. As a result, the school failed to call an ambulance when her son suffered a dangerous hypoglycaemic attack. Moreover, her son is excluded from attending after school clubs and is continuously discriminated against. Her councillor arranged for someone from the Local Authority to go into school, but Emma could not input into the report or respond to the school’s allegations. The report goes as far as stating that drinking water can prevent a hypoglycaemic attack, when it cannot. The school’s governors’ suggested she moved her son to another school and claimed, in writing, his presence is “detrimental to all other 209 pupils”. Emma contacted the Department of Education, who advised the school was in the wrong, but said Emma would need to resolve the matter for herself with the school. She contacted Ofsted, who advised her they do not deal with individual child’s issues.

Emma’s despair in trying to guarantee her son’s safety and inclusion, something he is entitled to by right, is exemplar of why action must be taken to make sure the duty is adequately implemented in schools.

Next meeting

Keith Vaz MP thanked all speakers for their evidence. He reiterated the need to raise accountability and ensured both APPGs would continue to take this matter forward.

The next APPG for Diabetes meeting will take place on Wednesday, 19 April 2017 and will focus on the Improving Inpatient Care: Challenges and Best Practices. Please email if you would like to attend.