Beyond NHS treatment: Why we support patients to access treatments not offered on the NHS
The NHS funds a variety of proven treatments for cancer. But in some cases, patients may wish to explore paying for drugs or treatments that are not available on the NHS. Here Dr Catherine Urch, cancer lead and divisional director for surgery, cancer and cardiovascular at Imperial College Healthcare NHS Trust, explains how and why some patients work with their clinicians to access and pay for drugs and treatments that are not available via the NHS.
Cancer is generally treated with some combination of surgery, radiotherapy, chemotherapy and, in some cases, targeted therapies and immunotherapy. All of these treatments are expensive, but are typically available on the NHS because they have proven effective in treating the majority of cancers we see here in the UK. However, when a person’s cancer continues to progress or there is a poor prognosis, they may begin to explore options beyond those in our NHS-funded arsenal. And, as possible new treatments are quickly expanding, there can be many options to consider.
At this point, we have to have very difficult conversations with our patients. Many patients choose to stop treatment altogether. Others decide to use their own money to explore treatments beyond those available on the NHS. In these cases, we want to support them to do this in a way that is clinically sound.
Getting approval for NHS use
Before a drug or treatment is made available on the NHS it must be approved by two different agencies. The European Medicines Agency (EMA) confirms that drugs and treatments adhere to specific safety standards. Once a drug or treatment is approved for use by the EMA, the UK’s National Institute for Health and Care Excellence (NICE) assesses it for use on the NHS. NICE considers a number of factors including efficacy, cost-effectiveness and benefits to patients. These benefits can be complex – a cancer drug may not add years of life, for example, but NICE may approve it for NHS use because the evidence shows the drug provides symptom relief and improves quality of life. These decisions are difficult, but NICE has an international reputation for providing measured, fair assessments of drugs and treatments.
Beyond NHS treatments
The only ways we can give a drug or treatment that is not NICE-approved are as part of a research trial, or privately. Occasionally pharmaceutical companies will fund the private use of a drug for a patient on compassionate grounds, but patients may simply have to fund their treatment themselves and work with their clinician to access that treatment. There are three situations in which this might happen:
- There is no published evidence that the drug or treatment will work, but there is a theoretical basis for its use. For example, a drug may prove effective – and even have NICE approval for NHS use – in treating one type of tumour in the lung, so we might theorise that it could work in the same type of tumour in another part of the body
- There is limited evidence that the drug or treatment will work – not enough evidence yet to convince NICE to approve it for NHS use
- There is evidence that the drug or treatment works, but it has not been approved by NICE. This may be because of the balance of efficacy versus cost, or because NICE is still assessing the drug or treatment and the Cancer Drugs Fund has not approved it
When a patient wants to access and pay for a drug or treatment that is not funded by the NHS, we as clinicians are faced with a challenging ethical quandary. If a patient wishes to access a treatment for which there are few – or no – known benefits, we worry that the patient will experience unpleasant side effects to endure a treatment that ultimately will not help them. We must also take pains to speak frankly about drugs and treatments that are not NICE-approved to ensure that we do not give our patients false hope.
If we decide to proceed, we will work with our patients to access the drugs or treatment in the safest, most cost-effective way possible. We will do everything we can to ensure the patient is fit to receive that treatment – this could include performing NHS-funded surgery prior to treatment. We will also negotiate the cost of the drug on behalf of the patient to ensure they pay the best possible price for it. The patient will then pay the manufacturer’s cost of the drug and a small fee for its administration.
Individualising care decisions
In the case of a drug or treatment for which there is little evidence of efficacy, we can only hope that there will be a benefit, and even that hope is slim. As we do in any case, we will discuss our clinical recommendations, including the benefits, risks and any alternatives, and encourage our patients to ask questions. Patients who consent to treatment – whether NHS, health insurance or self-pay – must confirm that they understand the risks of their treatment and want to proceed with that treatment anyway.
While we’re working with a patient to decide whether or not to move forward with this drug or treatment, we discuss their goals. What do they hope to get out of this treatment, knowing that it is unlikely to yield benefits such as adding weeks or months to their life? Some patients want to know that they have done absolutely everything they can to try to extend their lives and so they will proceed to spend money on treatments with few or no proven benefits. But we would only support a patient to do this if we were confident that this was the right clinical decision to make in light of the patient’s goals for their treatment.
And ultimately, we may reach a point where we have to tell the patient to stop. When we’ve worked with a patient and tried absolutely every option, the treating consultant will determine that there is no clinical basis to proceed with further treatment.
It can be difficult for some patients to stop treatment – some people will always hope that there is something on the horizon. But once we’re sure we’ve tried everything with a clinical basis, we encourage our patients to change their focus to things that support their emotional well-being. We will do everything we can to make the time they have left as comfortable and enjoyable as possible and encourage them to spend their time away from hospital if possible, enjoying the company of the people they love.