This is a response to the Health Select Committee inquiry into the management of long-term conditions.
- Continence problems are an element in many long-term conditions, with many patients using urology devices such as catheters to help manage this issue. Clinicians need to be encouraged to consider associated issues, such as continence, which may arise from certain long-term conditions, and take proactive steps to assess their patients’ wellbeing in this area.
- Patients need to be able to access specialist advice to help them manage their conditions and choose the right products, and need to be able to access those products – often there are local restrictions in place which prevent this from happening, despite the national processes in place such as Part IX of the Drug Tariff.
- Both general clinical and procurement staff should be encouraged to improve their knowledge of continence care and the importance of patients being able to access appropriate levels of care, support and treatment products.
- There is a need for greater coordination between hospital and community care, particularly for individuals with long-term conditions who may have repeated admissions to hospital.
- The Urology Trade Association (UTA) represents up to 95% of manufacturers and service providers who supply the urology appliance market.
- An estimated 6 million people in the UK are affected by continence problems. High quality urology appliances allow users to manage their conditions, maintaining their quality of life and independence and avoiding repeated medical consultations.
- The UTA welcomes this opportunity to respond to this inquiry on Management of long-term conditions – our submission will look primarily at the following aspects of the inquiry:
- The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community
- The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the managementoflong-termconditions
- The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions
- The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)
Overview – the role of continence care in managing long-termconditions
- Incontinence can be a long-term condition in its own right, however people with a large number of medical conditions also need continence management to be integrated into their care – these include cancer, stroke, spinal cord injury, MS, spina bifida, Parkinson’s disease and other neurological conditions. Therefore, there is a need to consider both how effective care is provided to deal with continence problems, and how continence is managed as part of other long-term conditions which mean that patients may have very complex needs.
- The quality of care received by patients with continence problems has not always been high; this has implications not only for patients but also for public spending. For example, in September 2010, the Royal College of Physicians published the National Audit of Continence Care, which examined the quality of continence services in England, Wales and Northern Ireland. It identified a number of significant weaknesses in the care offered to patients and found that there is unacceptable variation amongst NHS Trusts in the type, quality and quantity of continence supplies made available to patients. There are a number of reasons why continence care might not be well-managed.
- Many patients require specific urology products to cope with dexterity and other impairments as well as for their comfort, wellbeing and lifestyle needs. While the differences between products may not be obvious to non-users, small differences can cause discomfort, difficulties in independent use, and an increase in urinary tract infections. This means that patients with the wrong product may need to rely more on carers or may be less able to work or maintain a social life.
- A lack of knowledge among healthcare professionals who interact with patients, particularly GPs and community nurses, of the available products and the differences between them means that some professionals find it hard to recommend a product suitable for the needs of their patient. Specialist continence nurses are able to provide more specific advice and support, but not all patients are referred to these professionals.
- Individuals should be able to access any product listed on Part IX of the Drug Tariff (the new arrangements under Part IX of the Drug Tariff for the provision of stoma and urology appliances, and related services, in primary care was published in 2009 following three years of consultation and came into force in April 2010). For items to be included on the Drug Tariff, they must be safe and of good quality; be appropriate for GP and, if relevant, nurse prescribing; and be cost-effective. However, patients often have their choice restricted in a misguided bid by commissioners to save money.
- Some PCTs introduced formularies which restrict the choice of products available with the aim of saving money – while it is not yet clear how many of these lists will be carried over by CCGs, the increasing pressures on the NHS budget have led to concerns that CCGs will continue to look to save money in this way, despite the longterm negative impact on patients and the potential additional costs associated with treating infections or supporting patients who are less independent and mobile. While the Department of Health has insisted that formularies do not reduce choice because GPs have the discretion to prescribe any product on Part IX of the Drug Tariff, in practice this is not the case. As noted above, many GPs do not have the specialist knowledge to advise patients on appropriate products and with formularies being introduced they often get little or no training or information on non-formulary products. There have been cases where, for example, a study day has been organised, but only products or companies represented on the formulary are allowed to be present, further reducing the knowledge of staff. This means that to access non-formulary products patients have to be knowledgeable about both their right to access all products on the Drug Tariff and what products should be available and be willing or able to move their GPs away from the formulary products.
The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community
- Most patients with continence problems are already treated in the community for the majority of their care. However, there are a number of practical steps which could be taken to improve the quality of service provided within the community and ensure better outcomes for patients.
- Commissioners could be encouraged to think holistically about the impact of their spending decisions on the overall health budget, rather than just on specific areas, and avoid “silo budgeting”. Often the goal of staff making decisions about the range of available urology products seems to be to direct patients to cheaper products and so save money – however, as we have highlighted above, directing patients towards unsuitable products can have consequences with significant financial implications – including increased waste of products, increased tendency towards infection, and a lower ability to maintain a social and working life. This can impact on the welfare budget as well as the NHS budget.
- Staff involved in making decisions about which products patients should use – from procurement staff to GPs to community nurses – could benefit from increased training on the kinds of products which they use, to improve their knowledge of how their decisions can impact on patient outcomes as well as budgets.
- Patients should also be given better access to specialist services or nurses, so that they can get better advice on which products will help them to meet their needs, from a healthcare professional who has a good knowledge of both the system and the products available.
- There also needs to be consideration of how care in the community and the hospital interact with each other. For example, if patients learn how to use a particular product within the acute setting, and then this is not included on the local formulary, then this can prevent a smooth transition to the community setting and prevent the patient from developing a regime to manage their condition.
- Equally, given that many patients with long-term conditions have frequent spells in hospital, there needs to be greater consideration of how care between the community and the hospital is joined up. This means for example, ensuring that patients in hospital are able to access the products which they would normally be able to get in the community.
- As we have noted above, proper community care can reduce the need for hospital admissions, particularly emergencies. The Health Secretary recently raised the issue that primary care needs to look after patients in the community and ensure they don’t become ill, rather than ‘simply acting as a gateway’ to hospital. If patients are not able to access specialist continence advice or are given unsuitable products, this can increase the levels of ill-health and the need for admission to hospital.
The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the managementoflong-termconditions
- There are a number of forms of practical assistance which could be improved to support better continence care within the community.
- As noted above, it would be helpful if staff, both on the procurement side and the clinical side, were offered better training on the Drug Tariff, the products available, and how to help patients choose the most appropriate products.
- It would also be helpful if there was better provision of information, both to patients and to staff, on how the Drug Tariff works and the products which are available. While GPs and nurses deal with a wide range of patients and conditions and should not be expected to know every detail about continence, they should know where they can turn to for information or point their patients to – including sources such as the internet, magazines produced by charities, and suppliers of the products.
- In addition to this, there is also a need to consider how patients and clinicians are informed about new innovative products for bladder and bowel management. Innovation in urology and continence care has proved vital in improving the quality of patient care, with products designed for easy use by patient users in lifestyle situations at and away from home rather than by healthcare professionals in a clinical setting. However, if neither patients nor clinicians know about such products, then they will not be able to reach their potential.
The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions
- To ensure that patients are treated as a person, with their condition or conditions considered as a whole, there is a need to improve the amount of consideration given to continence care.
- For example, if patients have conditions which may include continence problems as an element, their GP or nurse should actively ask about their condition and whether they are experiencing any problems with continence. This is an issue which patients (and sometimes GPs) are often reluctant to discuss due to embarrassment, and there needs to be a greater focus on ensuring that these issues are actively raised, and that patients are referred to specialist service such as continence advice services where necessary.
- As we have noted above, GPs and nurses also need to ensure that they are considering the individual needs and preferences of their patients, so that they can find the best solution for their needs.
The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)
- Anecdotally, we know that patients who could benefit from being referred to a continence adviser for specialist advice and support are not always given this opportunity. As mentioned above, it would be beneficial for GPs and nurses to more proactively ask about continence problems, particularly patients with long-term conditions which tend to see a higher incidence of such problems.
- Commissioners should also be encouraged to ensure that they provide services with tailored support for individual patients. For example, we are aware of one PCT where concerns had been raised about the quality of the continence service. A new service was designed with a centralised approach, with financial and clinical responsibility residing with the specialist continence nurses running the service, rather than individual GPs who may not have the required knowledge to effectively prescribe products.
- This has reduced product wastage, often caused by inappropriate use of products or by patients receiving far more product than is actually necessary, which arose in part because nobody was properly reviewing patients’ prescriptions. The model successfully addresses issues of oversupply and prescription of unsuitable products through face to face contact with specialist continence nurses running the service, ensuring more effective use of NHS money and resources, as well as improved clinical outcomes for patients.
- Rather than contacting their GPs, patients now contact the continence service directly to request prescriptions for continence products, with clinical reviews a core element of the new service. Every time a prescription is ordered, a telephone triage is carried out, with the prescription coordinator asking questions about issues such as UTIs, skin soreness, and product performance and faults. If problems are identified, then patients are referred to the continence nurse specialist, to ensure a clinical review is undertaken before further products are issued.
- If no problems are identified, then a prescription is issued. Patients have a choice of receiving the prescription themselves to take to the dispenser of their choice, having the prescription sent to the chemist of their choice, or having the prescription sent to a DAC.
- Within this service, the Drug Tariff is respected; the continence service is able to prescribe any product listed on the national framework.
- The Trust identified that introducing the new service has allowed it to make significant cost savings of around 10%, which have been reinvested back in the service. It is clear that there are many positive features to this service, and good patient feedback has also been received, demonstrating that it is possible to save money while providing a more personalised service which takes a proactive approach to addressing the specific needs of patients.
Conclusion and recommendations
- The UTA would make the following recommendations to improve the management of long-term conditions:
- Clinicians should be encouraged to consider the associated problems, such as urinary incontinence, which may arise from certain long-term conditions, and take proactive steps to assess their patients’ wellbeing in this area.
- Clinicians should be encouraged to consider how decisions on how to treat one aspect of a long-term condition, such as incontinence, can impact on the overall wellbeing of patients and their ability to live independently and remain in employment.
- The Department of Health should be encouraged to ensure that choice of treatment options, such as urology devices, it maintained for those with long-term conditions, and that national processes such as the Drug Tariff are respected.
- GPs and nurses should be offered increased training on how to assist patients with continence problems, including how to be proactive in identifying problems and how to increase knowledge of the available treatment and management options.