Use this letter to complain that your local continence service isn’t providing enough pads/nappies to meet your child’s needs.
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.
Cerebra’s Legal Entitlements Research Project has provided advice on the reassessment of continence services for a little girl with cerebral palsy.
We were recently contacted by the mother of an eight year old girl, Jinny*, who has quadriplegic cerebral palsy. Jinny had previously been assessed as requiring five continence pads each day. Jinny’s mother, Mandy*, explained that she was concerned how the review of continence needs was being conducted.
A local NHS body had asked for Jinny’s continence needs to be reassessed, stipulating that this must take place over a three day period for fluid and a two week period for stools. Because the assessment had to be completed within four weeks, part of the assessment would have had to be undertaken while Jinny was at school. Mandy was worried about the assessment having to take place during term time. She was concerned that Jinny would be embarrassed and stigmatised if the assessment took place at school. In fact, she was considering withdrawing Jinny from school for two weeks in order to carry out the assessment at home.
Mandy was also worried because the NHS body wrote to her stating that if the reassessment was not undertaken within the specified timetable, there may be a delay in the delivery of continence products. Going further than this, an NHS employee told Mandy in a telephone conversation that if the assessment was not carried out in the stipulated time period, the continence supplies would be stopped. This was despite the fact that Jinny’s community nurse was willing to confirm that Jinny still needed the continence products.
After Mandy contacted Cerebra, a referral was made to the Cerebra Legal Entitlements Research Project at Cardiff Law School. Under this scheme, law students, under the supervision of academic staff and qualified solicitors, research relevant areas of the law and offer guidance for families who are not receiving their legal entitlements.
Mandy was advised that several legal issues had been identified. The main legal points were that:-
- NHS bodies have a duty, under section 2 of the Health Act 2009, to take into account the individual needs of patients and to ensure that policies do not discriminate against patients, even inadvertently.
- The National Institute for Health and Clinical Excellence (NICE) guidelines on paediatric continence services emphasise that treatment should be adapted to the needs and circumstances of children and their families; the views of children and their families should be taken into account; that continence problems can lead to bullying; and reducing unnecessary invasive examinations and procedures is a key clinical issue.
- Department of Health good practice guidance advises that children should not be excluded from school activities due to incontinence and children’s dignity and independence should be protected through the implementation of appropriate systems of care which also avoid the risk of bullying.
- Under the Equality Act 2010, it is unlawful discrimination to have a policy that disadvantages a disabled child and there is a duty to make reasonable adjustments for disabled people
- Under the European Convention on Human Rights 1998, it is unlawful to fail to provide timely health support to a disabled child and to threaten its withdrawal.
Cardiff Law School sent its legal opinion to Mandy. This explained the legal points outlined above and highlighted that the way in which the NHS body had approached the review of Jinny’s continence services had fallen short of its public law obligations and that it had acted unreasonably. It also pointed out that it would be unlikely for the continence needs of an eight year old girl with quadriplegic cerebral palsy to diminish over time. The opinion concluded that:
“one would hope that the NHS body would undertake a fundamental review of the implementation of the policy and in the instant case demonstrate considerably greater flexibility (for example by allowing the assessment to be undertaken during the school holidays)”.
Mandy forwarded this opinion to the relevant NHS body. This clearly had an impact as she reported back that she was able to order the next supply of continence pads without the need for the assessment to take place during term time.
Can our Legal Entitlements Project help you? Find out more here.
* names have been changed.