Health CommitteeWritten evidence from the Urology User Group Coalition (LTC 27)

Introduction

1. The Urology User Group Coalition (UUGC) welcomes the opportunity to respond to this inquiry into the management of long term conditions (LTCs).

2. The 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 LTCs of cancer, stroke, spinal cord injury, MS, spina bifida, Parkinson’s disease, and other neurological conditions.

3. The UUGC is particularly keen to raise points relating to the readiness of local NHS and social care services to treat patients with LTCs within the community; the practical assistance offered to commissioners to support the design of services; the ability of NHS and social care providers to treat the patient as a person; current examples of effective integration; and the extent to which patients are being offered personalised services.

The readiness of local NHS and social care services to treat patients with LTCs within the community

4. The majority of care for people with continence needs is provided in the community, though there are a number of issues which are set out below.

5. People with a wide range of LTCs have to deal with bladder and/or bowel dysfunction as a part of their condition. This aspect of their care is not always well-managed, with problems typically caused by the unsuitable or inappropriate provision of products (such as catheters, urinary sheathes, and leg bags) to manage incontinence or other causes of bladder dysfunction. Given the heterogeneity of people affected, there are a great many individual needs and requirements to cater for.

6. Apart from specialist nurses, the healthcare professionals responsible for prescribing products, including GPs and non-specialist nurses, often do not have a good knowledge of the available products and their differences, meaning that they are often ill-placed to advise patients on how to best manage their condition. GPs and non-specialist nurses should be encouraged to refer patients to specialists and to more actively discuss continence issues with patients, which all involved may be reluctant to do due to the sensitive nature of the topic.

7. Significant numbers of users of continence products have indicated to the UUGC that they had experienced problems accessing the products which best met their needs, with users also suggesting that they felt their GP or nurse did not always work with them to find the best product to suit their needs, and with many saying they did not feel their GP or nurse was well-informed about the available products.

8. The UUGC recommends that specialist nurses are best-suited to ensure patients receive proper advice on how to best manage their condition, and to work with patients to find the best product to suit their needs. In particular, the UUGC recommends that each clinical commissioning group and Health and Wellbeing Board publish a strategy setting out how they will train healthcare professionals to provide appropriate advice and support to patients with long term conditions, reflecting on their continence needs.

The practical assistance offered to commissioners to support the design of services

9. Individuals should be able to access any product listed on Part IX of the Drug Tariff, which covers the provision of stoma and urology appliances. The Drug Tariff is maintained as a national list of products which have been assessed as both clinically and financially appropriate, with a set price for reimbursement determined at a national level.

10. The UUGC supports the existence of the Drug Tariff, and is concerned that the list should continue to be maintained as a national list from which local commissioners cannot create formularies or other restrictions leading to a “postcode lottery”.

11. A system whereby products are reassessed by local commissioners and placed onto a formulary, will often lead to a more narrow selection of products compared to what is available on the national Drug Tariff. Such a system involves substantial bureaucracy and it is hard to understand what value is added to patients or the health service by both national and local evaluations of clinical or financial effectiveness.

12. In addition, if companies which produce continence devices have to face a further set of regulatory hurdles, it acts as a barrier to innovation which means that patients may face delays in receiving products more suitable to their needs than the ones they currently use.

13. Local commissioners should be supported to understand the need for patient choice in continence products, and recognise the impact the unsuitable products may have on patients, and on the wider health service. In particular, the UUGC notes that unsuitable products may cause serious discomfort or loss of dignity. Less-than-optimal products can also limit the ability for an individual to care for themselves and increase their reliance on others.

14. People with unsuitable continence products may also place an increased burden on the health and social care services, which may be entirely avoidable. For example, unsuitable products may lead to urinary tract infections, which cost the NHS in staff time and money to treat, and involve unnecessary disruption for the patient.

15. A July 2011 publication by the Department of Health regarding Any Qualified Provider for continence services noted that poor continence care could lead to unnecessary catheterisation, associated UTIs and pressure ulcers, which is the cause of 51,000 hospital admissions in 2008–09, with an estimated cost to the NHS of between £1.4 billion and £2.1 billion each year. The same publication noted that small improvements in the service could potentially result in great savings across the wide health economy and beyond.

16. The UUGC recommends that NHS England provides advice to local commissioners on the importance of patients being able to access appropriate medical devices (including continence devices), and when reviewing how healthcare organisations manage UTIs, consider whether limitations on access to appropriate medical devices was a contributing factor.

The ability of NHS and social care providers to treat the patient as a person; and the extent to which patients are being offered personalised services

17. The UUGC welcomes the legal requirements in the Health and Social Care Act 2012 on many new health bodies which require them to have regard to the NHS Constitution. However, the UUGC is keen to ensure that this is not simply a checkbox exercise, but leads to a real culture change throughout the NHS whereby healthcare professionals actively involve patients in decisions about their care, in particular listening and responding to patients’ feedback about the appropriateness of the continence devices they are prescribed.

18. Many continence service providers do offer excellent services to patients with continence issues, which are individually tailored to their needs and preferences. When specialist nurses are available to discuss with patients their issues and concerns it not only makes it more likely that wastage of products and unnecessary UTIs are avoided, but that the patient is able to maintain their dignity.

19. Conversely, people who have struggled with inappropriate products due to short-term decision making are evidence of poor ability amongst healthcare providers to treat the patient as a person. The UUGC is aware of numerous examples where patients struggle with avoidable continence needs such as an inability to self-catheterise with a particular product or operate a particular type of drainage tap, when alternative products exist the individual could simply and happily manage.

20. The UUGC recommends that best practice is effectively shared throughout the NHS regarding treatment and support for patients with long term conditions, monitored by patient feedback, and that NHS England keep under review the support provided to healthcare professionals in areas with lower levels of patient satisfaction.

Conclusion and Recommendations

21. In conclusion, the UUGC would seek to draw the Health Committee’s attention to the need for commissioners to be properly supported in understanding patients’ need for products which are suited to them, and the need for specialist healthcare professionals to discuss issues with patients. The UUGC is strongly in favour of a national list of products and against restrictions which limit patient choice.

22. To address these points, the UUGC makes three recommendations:

23. The UUGC recommends that specialist nurses are best-suited to ensure patients receive proper advice on how to best manage their condition, and to work with patients to find the best product to suit their needs. In particular, the UUGC recommends that each clinical commissioning group and Health and Wellbeing Board publish a strategy setting out how they will train healthcare professionals to provide appropriate advice and support to patients with long term conditions, reflecting on their continence needs.

24. The UUGC recommends that NHS England provides advice to local commissioners on the importance of patients being able to access appropriate medical devices (including continence devices), and when reviewing how healthcare organisations manage UTIs, consider whether limitations on access to appropriate medical devices was a contributing factor.

25. The UUGC recommends that best practice is effectively shared throughout the NHS regarding treatment and support for patients with long term conditions, monitored by patient feedback, and that NHS England keep under review the support provided to healthcare professionals in areas with lower levels of patient satisfaction.

List of UUGC Members

Back Up Trust.

Bladder and Bowel Foundation.

ERIC.

Multiple Sclerosis Trust.

PromoCon.

Shine.

Spinal Injuries Association.

Urostomy Association.

8 May 2013