Use this letter to complain that your local continence service isn’t providing enough pads/nappies to meet your child’s needs.
Public bodies shouldn’t adopt rigid policies which prevent them from exercising their powers in individual cases (the legal term for this is ‘fettering discretion’). Use this letter to ask the council to confirm in writing what their policy is.
Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.
Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.
The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.
During our research into Louise’s problem, we noticed that another part of the guidance said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to explain Louise’s situation and highlight the contradiction between the different parts of the guidance.
In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.
The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.
Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.
If you live in England and you’ve had similar problems to Louise, contact us at firstname.lastname@example.org
Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):
Please change or delete the green text as appropriate.
Continence products for my [son/daughter][name]
My [son/daughter] [name] is [age] and s/he has [disability/condition].
I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].
I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:
“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”
This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.
As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.
We are launching a new look for our Legal Advice Project which provides practical solutions to the legal problems families face.
Our Legal Entitlements Research Project has been going from strength to strength since it started in October 2013 and we’ve learned a lot about the problems parents face in getting access to services for their children.
The past few months have been a particularly eventful time for the project. Professor Luke Clements, who runs the scheme, recently moved from Cardiff University to a new post as Professor of Law and Social Justice at the University of Leeds. We’re delighted that the project will continue under Professor Clements’ direction at Leeds, which has a pioneering Centre for Disability Studies (CDS), bringing together scholars from a range of academic disciplines across the University. You can read more about the University’s ground-breaking work in a Disability News Service article. We’re grateful to colleagues at Cardiff University for all their hard work and commitment in establishing the project and we look forward to having other opportunities to work together again in future.
We’ve also welcomed a new Research Assistant to the team at Leeds, Sorcha McCormack, who will be working with Professor Clements to develop the project.
In light of these developments, we feel that this is the perfect time to relaunch the project with a new name – the Legal Entitlements and Problem-Solving (LEaP) Project. We’re committed to providing practical solutions to the legal problems families face and we wanted our new name to reflect our problem-solving approach. The project is all about making research relevant to families in their everyday lives.
We’ve also launched a new look website, with links to our Problem-Solving Toolkit, template letters, parent guides and other resources. We aim to add more resources to the site as the project develops. Our goal is to help parents get the legal information they need to address problems in getting access to services.
We’re always looking for new ways of sharing legal information with with families – if you have any suggestions, please contact us at email@example.com.
Cerebra has published a new Problem-Solving Toolkit to support disabled people and carers who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.
Research conducted by the charity and Cardiff Law School in October 2015 revealed that families of disabled children are experiencing substantial delays in getting an NHS diagnosis and too few parents are being given written information when they do receive their diagnosis. Support services are not always offered and, when they are, they often do not meet the needs of the family. Moreover parents are reluctant to complain about any of this and, if they do, their concerns are often not dealt with adequately.
Whilst UK law provides powerful rights to such support services, this alone can be insufficient. Professor Luke Clements, Cerebra Professor of Law and Social Justice, Leeds Law School and author of the Toolkit explains: “The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. There is a power imbalance and much research suggests (and indeed the Government accepts) that many families are fearful that complaining may make things worse”.
The Toolkit is a comprehensive, practical and easy to use guide to help families resolve difficulties with their statutory health, social care and education support services. It aims to help unpick commonly experienced problems and to offer effective strategies for resolving them. The Toolkit:
• considers nine general categories of dispute, from inter-agency disputes and complex cases to delays and resource issues, and offers detailed advice for resolving them
• identifies key factors that can empower people to claim their rights and to challenge failures when they occur
• offers advice on preparing for, attending and following up on meetings
• sets out a series of template letters that families can use in a variety of situations
It also provides a Jargon Buster, an explanation of what public authorities must do and explores a number of commonly held myths.
To accompany the Toolkit a central website, www.difficultbox.com, is being developed with links to law, practice and self-help guides that have been produced by many charities and support organisations. The facility to post comments and suggestions on the site is being developed.
The Problem-Solving Toolkit is free to download here.
The publication of the Toolkit has been made possible by a 2015 Economic and Social Research Council (ESRC) ‘Impact’ award in addition to financial support from Cerebra.