John Baron

Conservative Party | Billericay and District

NHS co-payments and the case of Mrs O’Boyle

Introduction

I am grateful for this opportunity to raise the case of my late constituent Mrs Linda O’Boyle who sadly died earlier this year following treatment for bowel cancer.

Linda’s case is both terribly sad and hugely frustrating.

She was a warm-hearted woman with a great sense of humour who gave much of her life to the NHS and helping others.

When she became ill, she had every right to expect the NHS would be there for her. But this was not to be: the health service let her down in her hour of need.

Many other patients have suffered as a result of the NHS not allowing co-payments – this being where a patient seeks to pay privately for a drug which is not funded by the NHS, whilst continuing to receive the basic NHS package of care.

But this is not allowed: if patients want to top up their care, Government policy means the NHS withdraws all free treatment.

[Often, treatment is eventually delivered within an NHS setting, but with the patient being presented with a bill for all aspects of care; and sometimes, as in the O’Boyle case, the patient is forced to go private for everything.]

* Part one

Facts of the case

The facts of the case are quite straightforward. Linda was diagnosed with bowel cancer and her first treatment at Basildon and Southend Hospitals went well.

However, it was decided she needed to begin second-line treatment with Irinotecan earlier than planned, and then her consultant had to inform the family that treatment was not working, which came as a great shock.

Of course, the desire to save or extend the life of someone you love is immensely strong. The family were desperate to find another treatment, and the consultant suggested that only Cetuximab offered a realistic hope of extending Linda’s life.

But Cetuximab is not available on the NHS for it had been turned down by the National Institute for Health and Clinical Excellence on the grounds of cost effectiveness.

Whatever one’s views about NICE and the fairness of some of its decisions, the relevant fact here is simply that state-funded healthcare was unable to provide Mrs O’Boyle with the treatment her clinician said she needed.

So the family decided to pay privately for the drug. Mrs O’Boyle had hoped to receive Cetuximab, at the family’s expense, at Southend Hospital where she could continue to receive the other care she had been receiving as a cancer patient.

The NHS care had been exceptional and the family understandably wanted it to continue – this issue is not about doctors, nurses or consultants, for they did an excellent job in caring for Linda as far as they were allowed to go; this issue is about Government policy, which stops them doing they job.

At this point, you might expect the NHS to do everything it could to help Mrs O’Boyle. After all, the purpose of the health service is to help extend life. But the family were told this would not be possible. O’Boyles ended up paying for all the necessary treatment, including care which ought to have been available on the NHS.

It is very difficult to escape the conclusion that our NHS effectively walked away from a dying woman at her moment of need – a woman who had given most of her life to the NHS.

Cost to the family

Naturally, the cost to the O’Boyles was huge. They also had to meet the cost of private consultations, prescription charges, home nursing care, and the full market price for Irinotecan and Cetuximab.

Taking everything into account, the overall cost was around £14,000. It would have been £50,000 had Linda survived that full 6 months of treatment.

Seeking to extend the life of someone you love is not an aspiration unique to the very rich. Clearly, people are prepared to make great sacrifices.

Reflections on the O’Boyles

With the consent of the family, I raised the case with some newspapers and there has been media coverage of Linda’s case over the last two weeks. This sort of publicity is never easy for relatives, but I know that Mr O’Boyle and his sons have taken the decision to go public because they feel strongly that what happened to Linda was wrong and must not be allowed to happen in future. I commend them on this attitude.

And yet, there are many patients from all over the country who find themselves in a similar situation. The Sunday Times has done splendid work giving a voice to these people, among whom the best-known example is probably the breast cancer patient Colette Mills.

* Part two

As for the arguments used by the Government to prevent patients making use of co-payments, I have the benefit of anticipating some of the Minister’s remarks because I wrote to the Secretary of State about this matter earlier in year. The reply I received was confused and inhumane.

Let us be clear about what co-payments is not. It is not about taking care away from one patient in order to help another patient go private: one drug is paid for privately – it is not subsidised by the state. This arrangement represents a move towards a “Pareto” optimum. In other words, one patient benefits without the prospects of any other patient being harmed.

“Treated equally”

Now, the Government says that co-payments must be banned in order to ensure that all patients are treated equally and a two-tier system is not created. But this argument misses the point.

Simply because a patient opts for some non-NHS treatments does not mean the NHS cannot treat all patients equally in respect of the state-funded care they receive: each NHS patient can still receive the same level of NHS care.

Patients seeking co-payments are not asking for special favours, preferential treatment or a hand up from the NHS; they are simply asking for their standard package of care to be continued alongside the top up.

But in cases where NHS care has been withdrawn, these patients understandably feel they are the ones being discriminated against – because of their ability to pay! That cannot be right.

There is a world of difference between, on the one hand, treating all patients equally and, on the other, penalising some patients because they have the means to top up their treatment.

“Free at the point of need”

This makes a mockery of the Government’s second argument for banning co-payments – that a ban is needed to keep the NHS “free at the point of need”.

But if we look at the case of Colette Mills or Linda O’Boyle, the NHS is the very opposite of free at the point of need! Firstly, not all drugs are available on the NHS because NICE does turn down some treatments, and then free NHS care is withdrawn when patients try to top up. That is not care free at the point of need.

“Same episode of care”

Now, the Government has a novel way of trying to get round this problem. It argues that NHS guidance clearly state that someone cannot simultaneously be an NHS and a privately-funded patient of the same NHS hospital within the same episode of care; and that all NHS treatment for the same condition, such as bowel cancer, counts towards the same “episode of care”. Ostensibly, this is because the Government do not want to mix private and public funding.

But this argument is clearly absurd. For one thing, some drugs are available free on the NHS and others are not. How can two treatments be part of the same “episode of care” if one is free and the other is not?

So if the health service itself has chosen to differentiate between treatments through the NICE process, it is simply hypocritical to condemn patients for seeking to do likewise.

Michael Summers of the Patients Association has made the same point in a similar way: he suggests the public does not see the “same episode of care” as being a crucial distinction. At the end of the day, “the public will just say that care is care”.

The Government is hiding behind the semantics of how one defines an “episode of care” definition about episodes of care because it lacks the courage, or perhaps the initiative, to deal with unjust policy.

All this issue requires is an open mind – and then guidance can be changed.

Already happening

Another reason why the Government’s position is perverse is that co-payments are already happening widely throughout the health service and other public services.

If I go to the opticians as an NHS patient and receive a free pair of glasses, there is nothing to prevent me using my own money to buy contact lenses. NHS care is not withdrawn.

Equally, in dentistry, a patient can have an NHS filling and then pay privately to have their teeth whitened. NHS care is not withdrawn.

Meanwhile, we have private beds in NHS hospitals, using NHS equipment and staff. Again, patients do not have other aspects of care withdrawn.

In the same way, if you send your children to a state school, free at the point of use, there is nothing to prevent you paying for music lessons or private tuition. These are top ups available to those with the ability to pay. They are often delivered within the same buildings as comprehensive education, but state education is not withdrawn.

What is so different about cancer drugs and treatments? I ask the Minister: if co-payments are good enough for teeth whitening and contact lenses, why are they not good enough when it comes to prolonging and perhaps saving life?

Future of cancer care

Mr X, Britain’s cancer survival rates still lag behind the European average, partly because we do not have the same access to the best new drugs – in this respect, we are the ‘poor patients of Europe’.

This is shameful given that Britain is home to some of the leading drug companies in the world and the leading cancer research institutes in Europe. The NHS needs all the help it can get.

If anything, we should be empowering, not penalising, those patients who opt for co-payments.

And this issue is not going away. Many exciting wonder drugs are predicted to be developed over the coming decade and patients and their clinicians will understandably want to use them. NICE is very unlikely to approve all of these drugs.

The NHS has a hard choice to make: Does it stick with the current policy, borne out of ideological dogma? Does it hold patients back from accessing the best care for themselves and their families? Does it walk away from dying men and women whose only offence is to use their own money to extend their lives?

Or do we as a nation do what we can to empower as many people as possible to get access to the best of the new treatments, without holding back or penalising in any way those who cannot afford top ups?

I believe the only civilised answer for any nation facing this dilemma is to save or prolong life where possible. Anything else is a far greater betrayal of the founding principles of the NHS and medicine itself.

This inhumane and illogical policy will one day be changed – the question is how long it will take the Government to recognise this and how many patients must pay the price in the meantime.