My Lords, I wish to speak in support of Amendments 54, 74 and 97, tabled by the noble Baroness, Lady McIntosh, and Amendment 163, tabled by the noble Baroness, Lady Finlay. I too pay tribute to the historic work of the noble Lord, Lord Patel, prior to the setting up of NICE.
While it is not an interest in the formal sense, I declare that I have autoimmune disease and have experience of being on the NICE rheumatoid arthritis care and treatment pathway for 19 years, which has been regularly updated by NICE over that time. Where it has been applied in full and from diagnosis, patients have found it very beneficial and, with new and more effective drugs being approved every few years, many are now in remission. I pay tribute to the consultants trying to do their best for their patients and the National Rheumatoid Arthritis Society and Versus Arthritis helplines which support RA patients in navigating their way through access to their NICE treatments when these have been blocked.
I thank the noble Baroness, Lady McIntosh, for her introduction to this group and for explaining the problem with the formulary list. She is right that this should be addressed formally. However, I want to focus on some of the commissioning practices on NICE-recommended treatments, including those on the formulary, in the current CCGs, because I believe these explain the need for the amendments in this group.
In May 2014, the High Court ruled that Thanet CCG could not disagree with NICE guidance merely because it disagreed with it, even when there is no statutory duty to provide that treatment. This specific case was about access to fertility treatments for a woman who was about to undergo bone marrow transplantation to put her severe form of Crohn’s disease into remission. NICE’s 2013 clinical guidance recommended that
“oocyte or embryo cryopreservation as appropriate”
should be offered
“to women of reproductive age … who are preparing for medical treatment for cancer that is likely to make them infertile”.
This was not cancer, and the CCG’s own policy was to not grant funding unless there were exceptional circumstances.
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One might think that, after the High Court ruling, CCGs would follow the High Court judgment, but many have found ways to delay the implementation of NICE treatment pathways recommended by consultants for their patients. A particularly unhelpful practice is that many CCGs have developed a committee for considering the initially more expensive NICE pathways. A nasty delaying tactic employed by some sub-committees, reported to me by consultants, is to meet only a limited number of times a year, meaning that there is an automatic minimum delay of some months before any request for a biologic drug can be approved for autoimmune disease. Worse still, one consultant told me that, when budgets are tight, some CCGs use bureaucracy to wait until the committee is due to meet, and at that point write back to the consultant to say that their proposal does not exactly meet the NICE pathway as they understand it and, like a game of snakes and ladders, the consultant must apply all over again. I am sure that this is because of budgetary means, but it makes a mockery of the principles behind the NICE pathway.
Some CCGs are interested only in the medication side—the noble Baroness, Lady McIntosh, talked principally about medication—and ignore the other elements of a NICE treatment pathway. In the RA pathway one key recommendation is that all newly diagnosed patients have access to specialist physiotherapy and occupational therapy, hand exercises, podiatry and psychological interventions, among others. Far too many patients are not offered any of these. The importance of this at diagnosis is that it helps to reduce symptoms, reduce bone damage and reduce future costs to the NHS.
My local CCG, among others, used to have specialist provision, but it now refers new patients to cheaper, non-specialist physios and occupational therapists, wasting valuable time to prevent damage to patients’ joints. I am horrified when talking to recently diagnosed patients to discover they have not been referred to any of the wider multidisciplinary teams, despite the clarity of the NICE guidelines.
NICE uses experts to develop the most effective and cost-effective treatment pathways. In the case of RA, this includes a ladder of medications that consultants and patients progress up, ensuring value for money as well as value for treatment. Providing a consultant uses the NICE guidelines and pathways, it should not be within the gift of any commissioning body to change or delay that.
These amendments place in the Bill the duty of ICBs to approve and deliver treatments as set out by NICE in full. We delude ourselves if we think that ICBs will not try to behave in a similar way to CCGs, not least because many of the staff who deal with the commissioning will have been TUPE-ed straight across from CCGs.
Amendment 54 tackles the problem of the patient in the High Court case I referred to, by proposing that if a clinician recommends a NICE-approved treatment, even if the treatment is not available to other patients in their area, the patient should receive that treatment. I agree.
Amendment 74 deals with the problems of poor practice in some of the CCGs, which I have outlined, and ensures that if NICE has an approved treatment pathway, ICBs should not be able to refuse it. The reporting mechanisms in Amendment 97 would hold ICBs to account publicly. I like the way that Amendment 163 links all this back to the NHS mandate, because of course the NHS is going to be providing the funding for CCGs.
To do anything less than accept these amendments is to demean the work and statutory role of NICE and its experts, to frustrate consultants trying to do their best under those guidelines for their patients, and to deny patients their fundamental right to access to treatment as approved by NICE. I look forward to hearing the Minister’s response and hope that it will be helpful.