NHS bosses, together with the Government, need to find new ways of delivering better patient outcomes, argues Andrew Allison. Existing shortcomings mean lives are being lost needlessly, he says.
When you grow up as a child in Britain, you are taught to regard the NHS as the envy of the world. As former Chancellor of the Exchequer Lord Lawson described it, the NHS is the closest thing we have to a religion. It’s too bad the reality doesn’t match the hype for most of us accessing NHS services.
Due to the annual NHS winter crisis, thousands of patients have had to wait longer for operations enabling them to lead normal lives again. Many patients waiting for hip replacements have had to wait over eight months for surgery, and three-quarters of NHS health trusts have drawn up strict pain rules to ration hip and knee replacement surgery. This only perpetuates the agony for thousands of patients in this service rationing lottery.
As bad as all of this is, patients are not going to die because they need their hip or knee replaced. Unfortunately, other patients do have their lives shortened because of inexplicable delays in approving and implementing new drugs and treatments. The National Institute for Health and Care Excellence (NICE) is responsible for approving new drugs and treatments for the NHS, and there seems to be an unspoken correlation between how expensive breakthrough drugs and treatments run and how long NICE delays their rollout.
NICE says that those drugs which offer exceptional value for money will have fast-track approval. But what about those treatments that are expensive? What about those patients who may die as a result of delays? Some drugs are expensive because they have life-changing outcomes. What about them?
NICE obviously wants the NHS to buy drugs at the best possible price available, but it has been accused of using patients as bargaining chips when drugs are likely to cost more than £20 million in the first three years of their rollout across the NHS. There is a growing list of examples of how patients are not getting the best treatments available because of delays in approving new drugs. Even worse, the NHS sometimes does not get around to using the latest treatments until it is too late for some patients.
The drug infliximab, for example, is used to treat ulcerative colitis, but it wasn’t prescribed for those with Crohn’s disease. Why? Because there are more Crohn’s patients and the treatments would cost more. Crohn’s is a fatal disease, but patients can still aim for a normal life span thanks to drug therapy. Denying the latest drugs to Crohn’s patients doesn’t just mean more pain and a poorer quality of life. It can also shorten a patient’s life expectancy.
Spinal muscular atrophy (SMA) patients face a similar trade-off, though at a much younger age. Spinraza is a new drug for the often-fatal genetic disease and has already been approved and made available to SMA patients (in many cases small children) in both the USA and a number of EU member states. American patients secured approval in December 2016, while the EU signed off last June. Parents of SMA patients have had to go through an ordeal to convince the NHS to extend them the same courtesy. After a huge delay, NICE got around to inviting Spinraza’s manufacturer to submit the “wonder drug” for approval last month. Why has it taken so long? In large part because of the £80,000 per dose price tag.
Those cost considerations also mean that multiple sclerosis (MS) patients face being rationed to just one drug, a rule that flies in the face of effective treatment. NICE’s decision-making is not based on clinical need. It is because other treatments are deemed too pricey. The MS Society is vigorously opposing these proposed changes, saying that “as MS affects everyone differently people find that different treatments are better suited to their MS”. It also says limiting the range of treatment options would risk a patient’s MS developing faster than it would have done, which should hardly be difficult to appreciate and understand. With a disease like MS, a one-size-fits-all approach is never going to work.
Even when treatments are available for some conditions, the NHS often does not act in the best interests of patients. Age-related macular degeneration (AMD), for example, comes in two forms, one of which can cause irreversible blindness within weeks if not treated quickly. NICE says that those diagnosed with the most serious AMD should start a course of treatment within two weeks, and yet delays in prescribing drugs mean that thousands of elderly patients could lose their sight.
The NHS was built on the mantra that treatment is available to all, free at the point of use, regardless of the patient’s ability to pay. What the NHS doesn’t publicise is that the best treatments available to patients in other countries are not necessarily available in the UK. This is a national disgrace.
This short-termism means patient lives are ended when they shouldn’t be. It also means more patients wait in agony because the pain thresholds for non-emergency treatments are so high. It’s cruelty on an industrial scale, with NICE at the top of the food chain pulling the levers of power over patients’ lives and denying patient choice.
Far from being the envy of the world, the NHS is a poor relation. Its monolithic structures are not designed to provide patients with the best possible choice of treatments delivered as speedily as possible. As the number of managers increases, the range of treatments decrease.
This decision-making model is harming patients. NHS bosses and the Government must find a new way of delivering better patient outcomes. There has to be a better way than risking thousands of elderly people’s sight because the NHS can’t get its act together to prescribe drugs in a timely fashion. If there isn’t, the NHS is doomed.