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Paediatric Continence Forum
Campaigning for Better Services
What is the Paediatric Continence Forum?
The Paediatric Continence Forum (PCF) is an independent national lobby group which is campaigning to improve services and resources for children and young people with bladder and bowel (continence) problems. It was set up in 2003 with close links to
As you know, many Primary Care Trusts are not giving children with bladder and bowel problems the treatment and support that they need. Services are further under threat with the proposed government health service changes and cutbacks.
Sustaining and improving services is therefore a major aim of the PCF. An early success was achieving a section on continence within the government’s 10 year template for children’s health services, the 2004 National Services Framework (NSF) for Children, Young People and Maternity.
Aims of the PCF
- To increase government awareness of the needs of children with continence difficulties
- To increase the number of integrated NHS paediatric continence services
- To improve the standard of drinking water and toilet provision and access in schools.
How does the PCF achieve its aims?
· Meetings with key civil servants and opinion leaders
· Liaison with NICE (National Institute for Health and Clinical Excellence) and the Department of Health
· Representatives on the PCF of key organisations e.g.
· Links to the new All Party Parliamentary Group on continence
What we want
Each area to have an integrated service to assess and treat children and young people with bladder and bowel problems (as one service and to include children with special needs). This service to have effective links with other local services, such as education, clinical psychology and social services; and as recommended in the 2010 NICE Commissioning Guide, each service to be led by a dedicated paediatric continence professional (this could be a paediatric continence advisor, a community paediatrician, or other appropriately trained professional).
Campaigns
- Amendments to the 1999 School Premises Regulations governing water and toilet provision and access
The argument for update has always been very clear – as the regulations for pupils are minimal compared to the workplace regulations that govern the same provision for teachers and it is clear that poor provision and access was contributing to continence problems.
In August 2009, after much lobbying, the PCF managed to gain the interest of the then Minister for Education, the Rt Hon Ed Balls MP, who agreed to a departmental review of these elements of the 1999 School Premises Regulations.
The PCF and
The current government is now reviewing all elements of these regulations; we have lobbied all the ministers involved – and are waiting to hear whether our amendments will be included. If they are, it will ensure that all schools maintain a minimum standard for the benefit of the health and education of our schoolchildren.
- A NICE Quality Standard for Paediatric Continence
NICE quality standards are a “set of concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions” (NICE 2010).
As part of the current Government’s vision for the NHS they are designed to help health and social care professionals make decisions about care and commissioners to commission services based upon the latest evidence and best practice.
The PCF is actively lobbying ministers and key civil servants in order to highlight the advantages of having a Quality Standard for children with bladder and bowel problems. The fact that we have three recent NICE guidelines in this area of child health should help this process.
Future Plans for the PCF
· To map the provision of continence services in
· To establish a regional system of MP champions to ask questions of their local Primary Care Organisations/ GP Consortia
· Achieve paediatric continence as a National Quality Standard
· Continue the parliamentary pressure on the implementation of the two NICE clinical Guidelines on childhood continence and the guidelines on commissioning paediatric continence services
· Continue to lobby on the current review of School Premises Regulations
Membership of the PCF
Our 18 members come from a range of backgrounds and areas of expertise across the fields of medicine and nursing. All have a passion for the subject and a desire to improve services nationally. The PCF is also generously supported by company members and is advised and supported by Portcullis Public Affairs. Click here for information about PCF members.
Achievements in the past year (2010-11)
-
Initiated and contributed to the NICE Paediatric Continence Commissioning Guide
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Raised political awareness with 30 Parliamentary Questions and two Early Day Motions – the first of which has been supported by 34 MPs
· Gained introductions to influence key opinion leaders via meetings at the Department of Health
· Achieved amendments to the 1999 School Premises Regulations ( relating to the provision of drinking water and toilet facilities and access) in conjunction with
The 2010 NICE Paediatric Continence Commissioning Guide
How you can help
If you are a parent or a professional and have experienced a decline in the continence services in your area, please let the PCF know. It would be helpful if you completed a questionnaire. This can be completed anonymously. Click here to download the questionairre.
We are also looking for examples of the NICE guidelines being put into practice – so if your service has been recently commissioned using the NICE Paediatric Continence Commissioning Guide, do let us know. Please email the chair of the PCF, Dr Penny Dobson.
We look forward to hearing from you.
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