Health and Social Care Bill

Memorandum submitted by Urology User Group Coalition (HS 131)

Executive Summary

· It is essential that patients with continence and urology problems are able to access the products/devices which are best suited to their individual needs, both to ensure the best clinical outcomes and to provide value for money to the NHS in the long term. However, this does not always happen in practice.

· While the Government has no plans to change the current arrangements for supplying prescribable urology products, it is not clear how they will work within the new system, or indeed they will work better than they do at present.

· We recognise that GPs could play a useful role in improving the quality of care provided, but are concerned that GPs and other primary care practitioners do not have the required specialist knowledge to be able to ensure that their patients have access to the best urology products for their individual needs. We are also concerned about the potential conflict of interest between patient choice and commissioning.

· The UUGC agrees with the aim of the Health and Social Care Bill to increase the accountability of commissioners for their commissioning decisions.


1. The Urology User Group Coalition (UUGC) represents the estimated half a million continence appliance users who rely heavily on urology products and services to maintain their health and wellbeing. We are also representative of many people with the vast range of clinical diagnoses that usually require continence management to be integrated into care and treatment pathways. These include the long term conditions of cancer, stroke, spinal cord injury, MS, spina bifida, Parkinson’s disease and other neurological conditions.

2. We welcome the opportunity to respond to this inquiry. This response will focus on clinical engagement in commissioning, the conflict between patient choice and commissioning, and local accountability.

Background: the current situation and concerns about the future

3. For patients with continence problems, it is essential that they have as much choice as possible over the devices they use to help them manage this condition at and away from home. This includes catheters, but also products such as urinary sheaths, drainage bags and other continence products.

4. Currently, access to urology products in primary care is determined by the new arrangements under Part IX of the Drug Tariff for the provision of stoma and urology appliances – and related services – in primary care. This was published in 2009 after an extensive review and consultation, and came into force in April 2010.

5. Part IX of the Drug Tariff lists the products which have already been assessed as being safe and effective, suitable for GP or nurse prescribing, and providing value for money to the NHS by specifying the price which the NHS should pay for each device. This enables urology product users to choose from a comprehensive range of devices, so that they are able to select and use the device which best meets their individual needs.

6. Many patients rely on specific urology products to cope with dexterity and other impairments as well as for their comfort and wellbeing. To a person not using them, two urology appliances may seem very similar - but for the people who use them, even slight variations can cause serious discomfort or difficulty, impeding their mobility, their ability to live relatively independent lives, and even lead to an increase in infections. A less than optimum product can stop self-care and create further care needs causing over reliance on carers - and can prevent both patients and relatives who need to care for them from working. This neither delivers effective commissioning of quality care nor enhanced patient outcomes.

7. However, some PCTs have chosen to formulate their own local arrangements outside of the Part IX arrangements, including restrictive product formularies, which limit the number and range of products available to patients in the area. This produces a postcode lottery for these devices, going against the aims of the national arrangements.

8. This is simply replicating a process which has already been carried out in developing the Drug Tariff, while further restricting patient choice. The amount of bureaucracy involved in accessing products which are not included in local formularies is often prohibitive, and many patients are not aware of their rights. Furthermore, there is a general lack of knowledge among practitioners as to what the Drug Tariff and the Part IX arrangements are.

9. Patients have also found difficulty in accessing the number of products which they need. Provision of continence products should be decided according to clinical need. However, according to the National Audit of Continence Care, "66% of PCTs impose a limit on provision".

10. While we understand that the current Government has no plans to replace the Drug Tariff as the mechanism for supplying urology products to patients, it does risk being undermined by the developments outlined above. The Drug Tariff is a system which provides commissioners with the necessary range of products, ensures value for money for the NHS, and an appropriate choice of products for patients, while avoiding a postcode lottery in access to products. If the aim is to create a patient centred NHS, then it is important that patients with complex, long-term conditions are able to have a degree of certainty that they will be able to access the products which they need to in order to manage their conditions.

11. At the moment, it is not clear how this will function in the reformed NHS. The move towards greater patient choice and involvement could of course be positive if it works well in practice, allowing patients a proper say on a matter of great individual importance. However there is the risk that GP consortia, led by non-specialists without a detailed knowledge of the needs of urology appliance users, may simply decide to carry on using the same formularies which have been used by PCTs, continuing to restrict patient choice.

Comments on specific aspects of the Bill

GP Commissioning consortia

12. The UUGC recognises that the move to GP led-commissioning has the potential to improve the quality of services by increasing clinical engagement in commissioning.

13. In order to ensure fairness in the commissioning of services, we are keen to ensure that national arrangements, such as the Drug Tariff, will continue to operate. We understand that the Government currently has no plans to change the ways in which urology products are supplied, and we hope that this will continue to be the case. The Drug Tariff allows GPs to make their own decisions about how services are delivered. It provides reassurance to both patients and practitioners about the quality and clinical effectiveness of the products provided, as well as the value for money which they offer.

14. We support the conclusions in the recent report on Commissioning by the Health Select Committee about the importance of clinical engagement in commissioning. We agree that it is essential that this engagement draws from a wide a pool of practitioners as possible in order to deliver the maximum benefit to patients.

15. It is worth bearing in mind that most individuals who have incontinence problems or bladder dysfunction are suffering from a long-term condition such as cancer, stroke, spinal cord injury, MS, spina bifida, Parkinson’s disease and other neurological conditions. These conditions are complex and multi-faceted and require a number of different treatment options. Therefore, there is a need to ensure that GPs have access to the specialist knowledge necessary to effectively advise patients on the best treatment options. While two urology products may seem very similar to a GP, small differences can have a big impact on the life of the person using the product, particularly their ability to be independent, to work, and to have a social life. The same can be said of community nurses, who are often more involved than GPs in the day-to-day care of continence product users, but similarly lack specialist knowledge of urology products and their use outside a clinical setting

16. This presents a particular problem when commissioners implement restrictive formularies which try to limit the products which patients are able to access. Although patients are technically entitled to any product listed on Part IX of the Drug Tariff, they often do not have sufficient knowledge of their rights and of the available products to be able to access them. If neither GPs nor community nurses understand what their patients are entitled to or the effect that inappropriate provision can have on a patient, then they are not in a position to ensure that their patient is receiving the best treatment.

17. While it has been confirmed by the Department of Health that they do not currently plan to change the arrangements governing the supply of urology products to patients, it is not yet clear how the reforms to commissioning will affect arrangements for patients to access urology products. We would be very keen to see those responsible for commissioning in the future take steps to improve their knowledge of specific areas, such as continence, where GPs may not have a great deal of specialist knowledge.

18. This could take a number of forms, including designating a lead commissioner for each consortia on specific areas or ensuring that tailored training and information is made available to commissioners making decisions on issues such as formularies. In areas such as urology care where national policy arrangements and the Drug Tariff underpin patient choice, these should be upheld and not restricted further. While this also underscores the importance of ensuring that patients are able to make their voices heard, it should not be forgotten that they also need to be aware of their rights to access certain products, something which is not always the case at the moment.

Patient choice and the role of the Commissioning Board

19. One of the key aims to the Bill is to increase the role of patient choice within the NHS, and we support this direction of travel. However, we do feel that there is a potential conflict of interest between patient choice and commissioning, particularly at a time of increased pressure on resources.

20. As mentioned, many PCTs have already put in place restrictive formularies for urology products, with the intent of limiting the choice that patients have over their products. Although many PCTs state that patients are able to access any products which are listed in Part IX of the Drug Tariff, in practice this does not happen because neither patients nor healthcare practitioners are fully informed about the range of available products and what exactly patients are entitled to access. This demonstrates the very real potential for conflict between patient choice and the allocation of resources by commissioners.

21. In fact, this often does not end up saving money for the NHS or the wider public sector in the long term. Due to the invasive nature of many continence products, any difficulties experienced can result in a need for hospital treatment meaning that such arrangements actually run the risk of raising the cost of treating people who use continence devices.

22. The average cost for the admission of emergency urethral catheterisation resulting from infection, is estimated in the region of £1,500 per patient, per visit. In addition, if patients are forced to change products, they must first be clinically assessed before being prescribed with alternatives. In specialist care, the associated and potential costs of such procurement initiatives are a considerable expense for PCTs and could potentially far outweigh any initial savings.

23. There are also the additional costs which result from patients being unable to work or maintain an independent lifestyle due to inappropriate provision of products. There are examples of individuals represented by the UUGC being housebound and reliant on carers for many years due to the fact that the products which they have used have not offered them the confidence and independence to leave the house for extended periods.

24. A further example of the kind of arrangements which give cause for concern is the recent tender for urology products issued by NHS Supply Chain (NHSSC), the organisation which supplies into secondary care settings. However, the new tender proposes to offer an off-script home delivery service to patients in primary care settings, which would see NHSSC becoming the "manufacturer" and supplying products directly to patients.

25. There seems to be a lack of understanding within NHSSC about the different needs for continence care in primary care and secondary care - patients in hospitals using catheters or other products over a short term basis will obviously have different needs and concerns to those patients with long term conditions who use continence products to help them cope with day to day life, and has not been recognised in the proposals.

26. In addition to this, there is a concern that such proposals will undermine Part IX of the Drug Tariff, which provides price protection for the NHS and manufacturers supplying products. If manufacturers can no longer afford to supply products to patients, then this will have a direct effect on patient choice. The proposals also threaten to remove patient choice over how they receive their product (at the moment they are able to fill prescriptions via a pharmacy or via a dispensing appliance contractor, both of which could be undermined by the NHSSC proposals for an off-script home delivery service given its dominant position in the market).

27. The danger is that a national formulary could develop out of restricted supply routes, replacing Part IX of the Drug Tariff, and limiting patient choice further. NHS Supply Chain have said that their aim is to achieve £1 billion of savings to the NHS by 2016; however forcing patients to use inappropriate continence products could undermine this if it ends up costing the Government more money overall due to increased infections, greater need for carers, the inability of those with long term conditions to remain in employment, etc. It is important that the overall picture is considered, rather than aiming to simply make crude short term savings, and that patient interests are put at the heart of decision making.

28. National developments such as this run a real risk of undermining efforts at the local level, by GP consortia, to increase patient choice and the role of patients in decision making. While these decisions are of course not made by GP consortia, they will inevitably impact on the arrangements in place for supplying urology products through primary care and will not support GPs in securing the best options for their patients. We very much hope that GP consortia will avoid the use of such restrictive forumlaries.

29. The Secretary of State for Health has maintained that there is no potential for conflict between GP commissioners making clinical decisions and allocating finite resources, on the grounds that the first duty of the GP will always be secure the best interests of their patients. However, the developments above show that there is a real potential for conflict between making the best clinical decisions and allocating resources, something which is only likely to increase in the current climate. We do not feel that sufficient reassurances have been given that this situation will be avoided under the new framework, particularly as GPs will have little control over developments such as those coming from NHS Supply Chain.

30. We would welcome more detail on the role of the NHS Commissioning Board in promoting quality and consistency and ensuring that a postcode lottery does not develop for access to products once decision making is devolved down to such a local level. Sir David Nicholson, the NHS Chief Executive, has recently said that the role of the Commissioning Board will be to safeguard the "core values" of the NHS, ensuring a fair and comprehensive system across the country, promoting the NHS constitution, and championing the interests of patients. We understand that the Board will support consortia by providing a national framework for local commissioning. However, we would be interested in further detail on how problems can be drawn to the attention of the NHS Commissioning Board and what steps they will be able to take to promote patient choice and improved clinical outcomes.

HealthWatch and Local Accountability

32. The UUGC agrees with the aim of the Bill to increase the accountability of commissioners for their commissioning decisions. It is vital that patients are able to make their voices heard and explain to those commissioning services on their behalf how they will be affected by the decisions they make.


33. The UUGC agrees that some of the reforms proposed in the Health and Social Care Bill could potentially lead to improvements in the quality of commissioning. However, we are keen to point out that the national Drug Tariff is essential to ensure that urology patients have access to a full range of products so that they can chose the one which best meets their clinical needs. This will also avoid the danger of a postcode lottery which is present when care decisions are devolved to the local level. We hope that GP consortia will respect the Drug Tariff when implementing the new arrangements, and that the NHS Commissioning Board will help to support patient choice in this area.

March 2011