Influencing Policy

Work on the Department of Health guidance, Good Practice in Continence Services.

Since the Department of Health's guidance was issued in March 2000, the Continence Foundation has brought various issues to the attention of Members of both Houses of Parliament. Among these have been:

(a) the need for the guidance to be explicitly referred to in the National Service Framework for Older People - this was successful, see Standard Two in the document published in March 2001 and available nton the Department of Health website.

(b) the need for implementation of the guidance to be monitored by the Department - this they declined to do.

We have also published for the use of continence services a booklet, Making the Case for Investment in an Integrated Continence Service, which brings together all the relevant facts and figures they need to encourage their local PCGs/PCTs to provide a comprehensive service on the lines recommended in the guidance, and a handout - addressed mainly to those who work in primary care - Incontinence - a challenge and an opportunity for Primary Care - from which relevant extracts are available here.

The Joint Monitoring Project

Since the Department of Health had no plans to monitor the implementation of the Guidance, the Foundation joined with the Royal College of Nursing Continence Care Forum to design a project to fill this gap.

A steering group was created including Trustees and clinical advisors to the Foundation, the Director of the Foundation, and an academic supervisor for the survey, which was to be carried out by Sue Thomas, Policy and Practice Advisor at the RCN, during a career break. Sue successfully applied to PPP Foundation for funding to cover her work at the RCN and is currently undertaking the survey in 5 health regions in England.

Two questionnaires are used, each asking specific questions about implementation of the guidance for integrated continence services. These are sent to leads for continence in primary care via the Primary Care Organisation (PCO) Chief Executive and to continence nurse specialists or specialist continence physiotherapist in the area. The second questionnaire also asks for a profile of the local continence service. The questionnaires have been largely completed by telephone interview but the survey has found that completion is easier if the respondents are able to see the questionnaire to collect the required information. Findings are anonymised.

From the pilot area of the South West respondents requested a feedback workshop and this has to date been organised for each Region, taking place after the initial analysis. In addition to everyone who had completed a questionnaire, invitations to this have been sent to other people whose work is essential to an integrated service: such as, urology and gynaecology consultants and physiotherapists. The purpose of the workshop was to feed back general findings from the survey, to offer some examples of good practice already identified, but also to enable people who might otherwise have little opportunity to meet, to plan the next steps they needed to take towards creating an integrated service. A similar workshop was held in the West Midlands.

The first stage of the project was completed in 2002. The response was exceptional: over 90% in the South West. Where services had difficulty finding local information, they appreciated that such information was essential to planning and making bids for funding. (This was acutely apparent to some services so badly resourced that they had to count patient records by hand because they had no IT provision.) Many people already recognise the need for tools for initial assessment, referral pathways from primary to secondary care, and more complex care pathways. There is also a need for more support in developing positions for the Directors of Continence Services: the first one in England was appointed in Dorset in December 2002, but in other areas they have had to be content with appointing a "clinical lead" instead of a Director -- there is considerable resistence to the title. The workshops have buzzed with positive energy, from a wide range of people eager to move forward on continence.

Examples of good practice that had been identified were presented at a major conference to mark the 10th Anniversary of the Continence Foundation on October 16th 2002 at the Royal College of Obstetrics and Gynaecology in London. Sue Thomas presented her interim report on the project, Good Better, Best Practice-- a printed version is available from the Foundation (£2.00 to commercial organisations, but free to NHS -- please send A4 s.a.e with 44p in stamps). Examples of good practice included: work with Social Services developing the role of staff in care homes, developing user groups (and accessing funding from a HIMP), developing the role of district nurses, a care pathway from Primary Care, using specialist nurses to triage patients before they reach a consultant, and general organisation of integrated services across a group of PCTs. Speakers agreed that their presentations could be made available on CD and this is now available (free to NHS in return for a small padded s.a.e. with 44p in stamps, or £5.00 to commercial organisations.)

The second stage of the project began in Spring 2003. The Steering Group met in March to decide on a much smaller set of questions to be asked, to find out what progress has been made towards implementation of the Guidance since the first survey was undertaken.

A second conference took place on 18 November 2003, in Leeds: title Integrated Continence Services, Making it Happen!. Plenary lectures included the final report on the project, Is Policy Translated into Action? and information about the audit of continence services for older people which involves both NICE and the Royal College of Physicians. Workshops were held to enable people to plan how to implement specific aspects of an integrated service. For a fuller report see the Conferences section of this site.

Now also available: a resource folder for PCTs and Hospital Trusts to use as part of their strategic approach to creating an integrated service. Contains a CD (with gaps for local details) and printed version of a document, "A strategic approach to integrated continence services". Also a sample job description for a Director/clinical lead, a bid for funding for such a post, a bit for funding for user groups and details of how to contact the lead person for projects which are regarded as examples of good practice. This resource folder is FREE.

Since then, the Foundation has continued to monitor progress across England and Wales in the creation of integrated continence services: a questionaire was circulated in 2005 and the results used to inform a chapter by Dr. Judith Wardle on "What is effective in the development and management of integrated continence services?", in The Effective Management of Stress Urinary Incontinence, ed Cardozo L, Robinson D and Miles A, London 2006. Dr. Wardle has continued to give conference presentations on the subject to help to ensure that the concept is not lost. There are encouraging signs that in spite of the fact that the date for implementation of the NSF Target for integrated continence services is well past (was April 2004), many local services and PCTs are still working towards integration.

VAT on Continence Products

People who are long-term users of continence products - such as continence pads - were for a long time not required to pay VAT when they bought them, but they did have to sign a certificate claiming eligibility for the concession, which the vendor then presented to Customs and Excise.

This worked well for mail order purchases, but was virtually unworkable when people bought continence pads in pharmacies and supermarkets - an increasing trend.

The Continence Foundation pressed for extension to continence products of the concession (form January 2001) that items for female sanitary protection should have a reduced 5% VAT rate. The campaign won the support of 128 MPs who signed a motion in Parliament.

We made representations to the Department of Health (similar letters went to the Treasury and others). The Government, however, pushed the Value Added Tax (Reduced Rate) Order 2000 through Parliament with a specific exclusion of continence pads. Many MPs raised the question of VAT on continence pads in the debate on the Order. In response Dawn Primarolo, the Paymaster General, announced that she had asked Customs and Excise to look at ways to make the zero-rating-with-certificates system work in the high street. The Government, she said, would be very reluctant to legislate for a blanket 5% rate on all continence products. We subsequently sent a letter to Customs and Excise setting out the case for just that concession.

The first official task of the new Director in March 2001 was to respond to a call to Customs & Excise to be told, to our delight, that they planned to make certain continence products available via retail outlets with the VAT already deducted. All that was needed was careful definition of the products and of the numbers that individuals might require - so that organisations could not take advantage of this concession to avoid paying VAT. The Association for Continence Advice added their assistance to ours to make these definitions appropriate.

The situation now is that individuals may purchase with no VAT charge and without filling in an exemption form up to:

• 200 disposable pads 5 washable pads
• 5 collecting devices 10 pairs of waterproof or leak-proof underwear

This does not mean that VAT has been abolished on these products, only that Customs & Excise have found a simpler mechanism for individual users. This system applies to orders by mail or over the Internet as well as on the high street.

Continence Service Provision in Nursing Homes

The discretionary free supply of continence products to NHS patients used not extend to people in nursing homes in England and Wales (unlike Scotland), since this provision was viewed as part of the nursing service that the nursing home fees are meant to cover. The home would usually therefore add the cost of pads - it was usually pads that were provided -- to their charges.

At almost the last possible moment (3rd May 2001) during debate in the Lords on the NHS Reform Bill, Baroness Masham, a patron of the Foundation, won from Lord Hunt a concession that people who are self-funding in nursing homes should be entitled to the same provision of continence services on the NHS as people living elsewhere. This was to be implemented from October 1st, 2001. Unfortunately, the suspension of parliamentary activities for the May election held up work on bringing out guidance about this change, although the Department of Health did seek information about the number of people who would be affected, which turned out to be over 41,000 and not the 24,000 at first assumed.

A meeting was held at the Department of Health of representatives of a wide range of organisations concerned with providing continence services, running nursing homes, manufacturing or distributing products, and representing users. Serious concerns were raised about the possibility of organising the new provision in time, especially the difficulty of finding staff for fresh assessments and sorting out practical matters like storage and distribution.

Unfortunately, the letter that went out to Primary Care Trusts more or less told them that they had to sort it out themselves, including picking up extra costs. It was not until the last week of September that extra finance was announced for self-funders in nursing homes: £100 million, of which £6 million was for continence, which sounds a lot until you do the sums and discover it comes to about £5.50 per person per week. Since pads alone can cost £5 a week (more for people with double incontinence) that left a pittance to pay staff to do the most essential work of assessing whether there were treatments that could reduce or even cure these people's continence problems. Also, there was a lot of confusion around the country about whether money was to be handed over to the nursing homes or somehow NHS services were supposed to take over provision, how much should be allotted per patient (including whether there should be different levels), and how this was supposed to fit into a time-table for assessing the nursing care needs of these people.

In December 2001, the RCN Continence Care Forum and the Continence Foundation took details of the national confusion to another meeting at the Department of Health. By March 2002, there was still considerable confusion among providers of service and distress among patients who were getting very varied levels of service around the country and not always getting the financial benefit that was intended.

The next stage occurred in April 2003, when the funding of all residents in nursing homes who have continence needs becamethe responsibility of PCTs, as will their other nursing needs. The Department of Health says there are 85,000 such people -- as recorded by people making a nursing "determination" of their needs -- and appears to be allocating only £4.00 per person for continence pads. Continence advisors assure us that this is not enough since many nursing home residents are at the high end of need. At least the confusion has now been sorted out that left some residents having their pads provided by the NHS and other homes given the money to purchase for themselves: the NHS is now definitely required to provide.

A major concern is still that there is a focus on providing pads rather than proper assessment and treatment.

Financial pressures on services.

The Continence Foundation continually monitors the state of continence services around the country, especially services provided in the community. This is made possible by the existence on this website of our database of continence services which potential patients can use to search for their local service -- and others can search by speciality or by the name of a particular advisor. When we do our annual update of information, just in case individual services have failed to update their details electronically on a rolling basis, we are able to send our questionnaires at the same time on such matters as waiting times to first appointment and pressures on budgets for both staffing and product provision. The results of such questionnaires are regularly reported in our professional Continence Review.