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.
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* names have been changed.