Policy responses and statements

Name of organisation:

Scottish Government

Name of policy document:

Better Diabetes Care

Deadline for response:

22 August 2009

Background: The Scottish Diabetes Framework of 2002 and the Action Plan of 2006 were ambitious programmes designed to bring about real benefits for people in Scotland living with diabetes. Diabetes care in Scotland has undoubtedly improved significantly as a result, but there are still significant challenges.

The need to address those challenges is intensified by the rate at which the number of people living with diabetes is increasing. Diabetes services, which are already working harder than ever, will need to continue to innovate and evolve in order to deliver care that is not only as efficient as possible but which is also fully responsive to the wishes of people with diabetes. To achieve this, we will need to take advantage of developments in research and in technology such as telehealthcare, while helping to strengthen the capacity of people with diabetes to influence services through their participation in the diabetes Managed Clinical Networks.

The Scottish Government wants our revised Action Plan to link with and strengthen the health improvement work already underway to address the relevant risk factors, such as obesity, diet and physical activity, as well as the unacceptable health inequalities associated with diabetes. It must also consider specific issues of importance to people with diabetes such as structured education needs, the availability of insulin pump therapy and access to psychological care. The consultation is also an opportunity to consider what more we can do to recognise self management as a vital component of diabetes care.

I Diabetes UK Scotland has helped in producing this consultation document. Its involvement during the consultation process will be crucial in helping the Scottish Government to obtain a valuable insight into the needs and wishes of people with diabetes that will inform the core of its Diabetes Action Plan for the next 3 years.

This is an opportunity to engage with this consultation and provide ideas, views and aspirations for future diabetes care. The Scottish Government wants to continue the ambitious approach of previous work through the revised Action Plan which it intends to publish this November as its contribution to the 20th anniversary of the St Vincent declaration on diabetes care and research.

COMMENTS ON
SCOTTISH GOVERNMENT
BETTER DIABETES CARE

The Royal College of Physicians of Edinburgh is pleased to respond to the Scottish Government on its consultation on Better Diabetes Care. Our comments are as follows:

SECTION 3.3 – SUPPORTING IMPROVEMENT

Issues to consider

• How can we ensure that clinical standards are being maintained and improved?
• What is needed to ensure that the updated SIGN guideline drives forward service improvement?
• What more can be done to increase the effectiveness of the diabetes Managed Clinical Networks in developing local services.

SCI-DC has an integral role in monitoring standards. It is important that this monitoring continues and with greater integration of SCI-DC interfaces between Primary Care, Secondary Care, Community pharmacies and other extended members of the diabetes team, it will become more sensitive and informative. This integration requires further support and development since SCI-DC is the corner stone of diabetes health care in Scotland and as such it should be funded nationally.

The College strongly supports direct access by patients to their own diabetes health-related data and can appreciate that patients may, in time, contribute directly to their data and thereby improve their records. Data capture by SCI-DC could be extended further to include the ambulance service eg to identify and record when patients with severe hypoglycaemia are treated at home, and useful information could be obtained routinely from prisons and care homes.

Explicit evidence-based standards of care in SIGN guidelines need to be augmented with good practice points, even if these do not have such a strong evidence base. The new updated SIGN guidelines should be incorporated into NHS QIS standards.

Managed Clinical Networks are a powerful tool to identify particular areas of need within a locality eg inner-city ethnic minorities or areas with a predominantly elderly population. Appropriate representation on the MCNs and effective communication strategies should allow them to retain a focus on the development of local services.

While QOF and SESP have ensured the involvement of Primary Care in measuring outcome targets, these targets tend to be “number driven” rather than patient-centred and are not necessarily a measure of quality of care. MCNs have a role in ensuring holistic patient-centred care packages rather than simply measuring numerical outcome.

SECTION 3.4 - FOCUSING IMPROVEMENT

Issues to consider

• How can we continue to improve paediatric care and what are the priorities?
• What would be the role of a national Paediatric MCN for diabetes?
• How can transitional care arrangements be improved?
• How do we ensure that children with diabetes are supported at school?

Type I Diabetes – Children and families

With the increasing prevalence of Type 1 diabetes in young people, children with diabetes and their families and carers require a huge amount of specialist support. Specific recommendations regarding the number of paediatric diabetes nurse specialists could be made in this document. This is a priority, and it should also be noted that these specialist nurses have a pivotal role in supporting young people through the transition from paediatric to adult care.

There is a clear need to improve glycaemic control across the paediatric and adolescent age ranges, given recent evidence that Scotland and the UK do not compare favourably with many similar countries (see paper by Dr Stephen Greene from Dundee, published in Archives of Disease of Childhood 2009: 94; 251-253). A national paediatric MCN for diabetes would be an important development that could initiate national pathways of care for young people with diabetes and support their implementation uniformly across Scotland. It might also prevent “post code lottery” eg in the use of insulin pump therapy. The larger teaching Boards might support the non-teaching and smaller Boards if benchmarking showed this to be necessary. It would be sensible to await the outcome of the Short Life Working Group’s deliberations on these issues before making firm recommendations.

Schools should be encouraged to have a small number of guidance teachers with a particular interest in medical conditions and helpful packs on the management of common disorders such as diabetes, but information on other conditions such as epilepsy and asthma, could be made available as an educational resource. Delivery of this would be local and involve the diabetes specialist nurses.

SECTION 3.5 - PSYCHOLOGICAL AND EMOTIONAL SUPPORT

Issues to consider

• What further improvements can be made in the provision of psychological support for people with diabetes?
• How can these improvements be achieved?
• What outcomes would indicate acceptable progress in this area?

The available psychological support for patients with diabetes remains inadequate across Scotland. The College agrees that health professionals involved with the care of patients with diabetes should have access to training in psychological issues. Unfortunately, training courses developed at national level have been available to only a relatively small number of health professionals who find it increasingly difficult to take time out for further training. In the ideal world Boards should be encouraged to fund sessional psychological support to work with local diabetes teams so that they can use this expertise with diabetic patients. There is a potential to develop closer linkage with hospital-based liaison psychiatry/psychology services which develop expertise in psychological complications of many medical illnesses.

SCI-DC can be a very useful checklist to make sure that all aspects of care are addressed and an annual review of some simple psychological issues should be included as a prompt.

SECTION 3.6 - DIABETES- RELATED HOSPITAL ADMISSIONS AND INPATIENT CARE

Issues to consider

• How can we further reduce the numbers of diabetes-related hospital admissions, and what should the priorities be?
• How can we measure in-patient activity for people with diabetes more effectively?
• How can we improve the quality of in-patient care for people with diabetes?

Diabetes-related hospital admissions can be reduced further by education on early intervention and the availability of telephone help. Co-ordination of NHS 24 with local diabetes teams would be a welcome development, particularly for insulin-treated patients.

Coding of co-morbidities in hospital admissions should be encouraged and could be a measurement requested in a future Scottish diabetes survey. Those boards with very low prevalences of diabetic inpatient activity should be encouraged to improve coding.

It is right to highlight diabetic ketoacidosis in an attempt to standardise its management and reduce its incidence across Scotland. This, however, is not the major issue in diabetes inpatient care across Scotland. Many studies across the UK have highlighted the burden of inpatient diabetes care in the 10-20% of hospital inpatients who have diabetes but who have been admitted for other reasons. These patients have prolonged lengths of stay and increased morbidity and mortality, some of it related to sub-optimal management by non-specialists. This is compounded by the lack of adequate training of junior doctors and ward nursing staff and by the failure to widely implement initiatives that have been shown to improve outcomes such as in-patient diabetes specialist nurses and the adoption of standardised protocols of care.

The highest priority should be given to establishing an in-patient diabetes nursing specialist service in every hospital to provide high quality clinical care, to reduce the patients’ length of stay and to facilitate timely liaison with the rest of the specialist team when complications arise.

SECTION 3.7 – BLACK AND ETHNIC COMMUNITIES

Issues to consider

• How can we further improve services and the experience of care for people with diabetes from minority ethnic communities?
• What would indicate acceptable progress in this area?

High prevalence areas should encourage involvement of ethnic minorities in the MCN.

SECTION 3.8 – DIABETIC FOOT CARE

Issues to consider

• How can we continue to improve foot care for people with diabetes?
• What outcomes would indicate acceptable progress in this area?

The National Foot Screening Programme is a major success of the diabetes action plan, and the increased use of risk stratification is the key to ensuring a match between the clinical need of those “at risk” patients with specialist podiatrists with a move away from routine foot care in low risk patients, which should be devolved to health care assistants.

The robust end points of measurement such as amputation rates and frequency of foot ulceration remain the corner stones of measurement of progress. At present, there is substantial variation in the reported prevalence of foot ulceration across Scottish Health Boards. Prevalence is highest where there is greatest interest in foot care services, so this probably reflects the fact that enthusiastic services are more likely to identify and document the ulceration. Until foot ulceration is more accurately documented nationally, and this may be helped by the new specialist foot module on SCI-DC, it will be difficult to demonstrate an improvement in outcomes for foot care. The next SIGN Guideline on Diabetes Care may provide explicit direction.

SECTION 3.9 – RETINOPATHY SCREENING

Issues to consider

• How can we continue to improve retinopathy screening and eye care for people with diabetes?

The Digital Retinal Screening (DRS) Programme has now been successfully established in all Health Boards. Documentation could be improved by capturing eye screening undertaken by Optometrists outwith DRS. So this would provide an opportunity to involve, and not disenfranchise, optometrists from using this scheme. It could also be improved by documentation of those patients who are not receiving retinopathy screening but who attend hospital eye clinics, either because they have established diabetic retinopathy or require treatment for other eye conditions.

SECTION 3.10 – STRUCTURED EDUCATION

Issues to consider

• What outcome would indicate progress in the area of structured education?
• How can we improve access?
• How can we ensure quality across Scotland?

The evidence base for programmes such as DAFNE and DESMOND is becoming more robust. One problems is that implementation of such programmes across Scotland is patchy. There appear to be tensions between Primary Care and Secondary Care as to the ownership and funding of such programmes, even although these are supposed to be overseen by local MCNs. Accordingly, the Scottish Diabetes Group needs to give greater direction to local MCNs about such programmes. Specifically, the programmes need to be quality assured at a national level both in relation to content and the competencies and training required of the educators.

Another approach would be to embed structured education within SCI-DC to ensure standardisation across Scotland. With the increasing availability of internet access to the population, patients should be able to access their own SCI-DC record and within that record access and review educational material that has been shared with them.

As mentioned previously, the Scottish Diabetes Network, QOF and locally enhanced services have achieved an enormous improvement in outcome measurements (eg blood pressure, HbA1c), but targets will only be delivered by structured educational programmes. Future NHS QIS assessments of health board areas should include more sophisticated evidence of educational delivery across the diabetes population.

SECTION 3.11 – PROFESSIONAL EDUCATION

Issues to consider

• How can we ensure access to appropriate education for all health care professionals and health care workers in Scotland?
• What outcomes could assess this?

The job plans of Diabetes Nurse Specialists need to focus on availability of time for personal and professional development. A significant part of their role in the future will involve sharing their expertise with other health professionals to deliver appropriate support in schools, care homes and custodial settings and their education should reflect this. Annual appraisal could be the mechanism for ensuring that appropriate CPD is undertaken by individuals and this could be scrutinised for each MCN by NHS QIS.

SECTION 3.12 – RESEARCH

Issues to consider

• What should future research priorities be?
• How can we increase public involvement in research?

The Scottish Diabetes Research Network should be applauded for its breadth and inclusivity, and is now best placed to determine future research priorities and to increase public involvement.

SECTION 3.13 OUT OF HOURS SERVICE

Issues to consider

• What can be done to ensure out-of-hours care services are equitable across Scotland?

Discussions have taken place between the Type 1 diabetes Short Life Working Group and NHS 24 on improving diabetes out-of-hours services. It is noted that this is seen as a viable alternative to extending DiabNet across Scotland, and also that other help lines are available to patients such as the Novo Helpline staffed by diabetes specialist nurses. The College would seek a major assurance that NHS 24 can provide a service as good as one provided by diabetes nurse specialists before any such scheme is sanctioned. The experience of NHS 24 in relation to other health problems is that the algorithm defaults early to – “go to A&E”. If patients with incipient diabetic ketoacidosis or problematical hypoglycaemia are to avoid being admitted to hospital (hence meeting HEAT targets), early advice from an experienced diabetes professional is essential.

If NHS 24 develops a larger role in out-of-hours diabetes care services then it should have access to SCI-DC and similarly both the ambulance service and NHS 24 should contribute to the SCI-DC record.

SECTION 3.14 – PREGNANCY

Issues to consider

• What initiatives could further improve outcomes of pregnancy in women with diabetes?

The increasing prevalence of type 2 diabetes in women of child-bearing years needs to be highlighted, particularly in Primary Care, as these are patients that potentially may not be receiving optimal pre-pregnancy advice.

SECTION 3.15 – PUMP THERAPY

Issues to consider

• What further steps should be taken to increase the appropriate availability of insulin pumps?
• What support structures need to be in place to ensure that insulin pump therapy is fully effective?

This is a complex therapy that is currently of benefit to less than 2% of the diabetes population in Scotland. As such, insulin pump therapy is probably greatly under-utilised in Scotland, certainly compared to comparable smaller countries such as Scandinavia. Over the last 25 years we have lagged behind, largely based on the cost of providing not just the technology but also the supporting infrastructure of Diabetologists and Nurse Specialists/Educators. Pump-led technology is moving on rapidly particularly with the development of sensors which are wirelessly linked to the pumps.

Arguably, the cost-benefit analysis of providing pump therapy now needs to look at the future costs of poor glycaemic control incurred by not providing more extensive access to pump therapy, rather than merely looking at the costs of pump therapy per se. The costs of pump therapy are modest in comparison to those of biological agents for conditions such as inflammatory bowel disease, rheumatoid arthritis, multiple sclerosis and the like.

Explicit guidelines for the commencement and importantly, discontinuation of pump therapy, should be disseminated. Consideration should be given to developing a national system for both financing and procurement of pumps and consumables.

SECTION 3.16 – CARE HOMES AND OTHER SETTINGS

Issues to consider

• What developments could improve diabetes care for those in care (including custodial) settings?

Local diabetes MCNs are in a prime position to identify specific areas of need within their communities and should liaise strongly with any other relevant long-term conditions networks.

SECTION 4.2 – SUPPORT FOR SELF-MANAGEMENT

Issues to consider

• What outcomes would indicate acceptable progress in improving support for self management for people with diabetes?
• In what ways should a future diabetes action plan build on the Self Management Strategy for long term conditions?
• What kind of diabetes initiatives would you like to see funded by the Self Management Fund?

Self-management is a two way process. Engagement will improve as the patient feels involved in their care, and progress could be made with initiatives such as “know your numbers”, copies of any correspondence directly to the patient and ultimately involving the patient in their own SCI-DC record (See section 3.3)

A trial of funding to see how patients might be involved in their own SCI-DC record and to see what benefits accrue would be highly desirable.

SECTION 4.4 – SELF MANAGEMENT AND VULNERABLE GROUPS

Issues to consider

• What more should be done to support people with diabetes who are particularly vulnerable, for example, people with learning disabilities, to self manage more effectively?

Patients with a learning disability should always have involvement of local disability carers to attend appointments, and they should be involved in any management programmes.

SECTION 4.5 – INVOLVEMENT AND PARTICIPATION

Issues to consider

• How do we ensure that people with diabetes and their carers are able to participate in local service planning?

The measures to include patients in their MCN, in the Diabetes Care Focus Group and the Scottish Diabetes Group should be strongly supported with continued funding. This is fundamental to the development of patient-centred services, but difficulties can arise either by “clinic selection” or “self selection” of patient representatives. A literature search of measures to achieve success in patient selection and involvement from other specialties should be pursued.

SECTION 5 – PREVENTION, DETECTION AND SCREENING

Issues to consider

• How do we encourage the prevention of diabetes?
• How do we target at-risk groups?
• What more could be done to tackle diabetes in deprived areas?

This is an important section that could be more focused and might include reference to important work done in the past. For example, both the Finnish Diabetes Prevention Study Group (N Engl J Med. 2001, 344:1343-50) and the US based Diabetes Prevention Program Research Group (N Engl J Med. 2002, 346:393-403) showed impressive results from lifestyle interventions that markedly reduced the rate of progression from impaired glucose tolerance to type 2 diabetes. The applicability or otherwise of these findings to the Scottish population should be considered.

Similarly, mention is made of the high prevalence of obesity and the Scottish Government’s plans to take measures for the whole population through Healthy Eating Active Living. However, there is no mention of bariatric surgery, an intervention that has a strong evidence base both for reversal of established type 2 diabetes and prevention of progression to new type 2 diabetes. Access to bariatric surgery is extremely limited in the NHS in Scotland and inequitable across Scotland. It is arguably the only intervention likely to be effective for some young morbidly obese people.

Community pharmacies may be in a key position to identify those at risk, either from identification of co-morbidities or lifestyle issues and could perhaps offer basic point of contact screening, which if equivocal could generate formal assessment. The advantage of the use of community pharmacies is that they are widely used by the local population in whom they can identify particular at-risk profiles.

Healthy living initiatives from early education to adult life should continue to be funded and are particularly important in deprived areas.

GENERAL COMMENTS

This document is a timely review of progress on implementation of the 2006 action plan and a look ahead at future planning. It is extremely wide-ranging and not surprisingly, therefore, the depth of information and argument is quite variable across the sections. Since inception, the Scottish Diabetes Framework and the Scottish Diabetes Group have done much to improve standards of diabetes care in Scotland and to describe the epidemiology of diabetes and the range and quality of diabetes care in Scotland. The College is broadly supportive of the way ahead which is charted in this consultation document.

Areas that RCPE would particularly highlight for prioritisation are the need for continued support and development of SCI-DC, the improvement of inpatient management for all patients with diabetes no matter the reason for admission to hospital, and also the clear need to improve psychological support services for patients with diabetes, particularly young people.

Good progress has been made in diabetes care in Scotland over the past 10 years, and recently this has been exemplified by work done to address the ‘9 by 9’ goals of the 2006 Action Plan. However, it is clear that much more needs to be done. One of the strengths of the diabetes MCNs has been their focus and ability to make this kind of progress. The current MCN model should be strongly supported, and there should not be any move towards amalgamation of MCNs.

The excellent leadership provided through the Scottish Diabetes Framework is important and should be given continued support.

Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.

Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939

[19 August 2009]