My Lords, I support Amendment 163 in the name of the noble Baroness, Lady Finlay, to which I was delighted to add my name.
Perhaps I may remind the Minister of his very first session at the Dispatch Box. He confirmed to your Lordships that the Government had full confidence in the processes at NICE. In a follow-up letter to me he wrote:
“The National Institute for Health and Care Excellence (NICE) is the independent body that develops authoritative, evidence-based guidance for the health and care system to drive best practice. NICE is one of the few organisations with a remit spanning the NHS, public health and social care, meaning it is well placed to provide a system-wide perspective and support Government priorities for the health and care system.”
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As noble Lords have outlined, and the Government have acknowledged, the process for publishing guidelines is authoritative, evidence-based and drives best practice. Why then would the Government not want to include a review of compliance with NICE guidelines to be stipulated in the mandate, which is all that Amendment 163 seeks?
I declare my interest as chief executive of Cerebral Palsy Scotland. I want to highlight the challenges faced by people with long-term conditions, particularly adults with cerebral palsy, who struggle to find co-ordinated, specialist services. The guidelines for adults with CP were published in January 2019. I can confirm that the
process was indeed thorough and collaborative; Cerebral Palsy Scotland contributed as a registered stakeholder, even though NICE does not necessarily apply in Scotland. The process had wide cross-sector and specialty support. However, the guidelines are yet to be implemented.
In addition to the guideline, a year later, in January 2020, NICE published a quality standard on care and support for adults with cerebral palsy. This included a recommendation that adults with cerebral palsy be referred to a specialist multidisciplinary team. Adults with CP feel that they are second-class citizens. Their daily experience is of struggle to access any specialist services, in contrast to other lifelong conditions. For some reason, health services for people with CP are concentrated in paediatric services, and despite the fact that having CP does not in itself give you a reduced life expectancy, the NHS seems to believe that once you reach the magical age of 18, your cerebral palsy suddenly is not a problem any more.
The NICE guideline and quality standard both recognise the challenges that adults with CP face and that some people require access to specialist multidisciplinary teams, experienced in the management of neurological impairments, who can work to identify their needs, understand how they may change over time and refer on to specialist and local services as appropriate. Unfortunately, not enough of these services exist. The policy framework might be there, but we are doing absolutely nothing to ensure that it is implemented. People with cerebral palsy are asking, “What is the point of NICE?”
Since the Government clearly value the work of NICE, I urge the Minister to take the opportunity of these amendments to ensure that NICE guidelines are put into practice. Therefore, I look forward to the Government’s support for the amendments.