Duty of candour: should this patient have rapid access to siponimod?
If doctors don’t put their heads above the parapet to support their patients, who will?
Case study
A 43-year-old woman with secondary progressive MS who seems eligible for siponimod cannot access treatment via her local MS service. What should she do? She has not had a clear relapse, but her latest MRI scan shows new lesions.
Her consultant neurologist wrote her a long apologetic letter explaining that he had completed an incident report highlighting their concerns about permanent damage to her function that may have arisen from an ongoing failure to provide licensed, NICE-approved, disease-modifying therapy (DMT) for people with active secondary progressive MS.
In a subsequent letter, they wrote, “regrettably, due to ongoing service provision shortfalls, they have still not discussed the vast majority of their secondary progressive MS patients at their MS multidisciplinary meeting (MDT) for a decision on Siponimod eligibility. Having reconsidered, they believe the level of harm you sustained due to our protracted service provision deficiencies is high”.
They then went on to say, “they will be asking their MS service lead and manager to amend the harm level their previous manager had queried to high and to make sure that their ongoing failure to provide licenced, approved DMTs to people with secondary progressive MS is listed on their corporate risk register”. They noted in the letter that their ongoing failure to provide licenced, approved DMTs to people with primary progressive MS is already on the risk register. They also asked management “to launch a Clinical and Professional Review of Incidents (CaPRI) investigation into the harm you have suffered as a result of their failures”.
Finally, “on behalf of our NHS Foundation Trust, I want to take this opportunity to say how sorry we are for any upset and undue stress this incident has caused you and your family”.
Prof G’s opinion
This woman with SPMS has lost time and continues to lose time. Some would argue the treatment effect of Siponimod is not that large, so not much has been lost. However, you can’t assume this patient will not have further relapses. What would happen if, in the interim, she had a catastrophic spinal cord relapse that left her paralysed with loss of lower or possibly upper limb function? Who would be responsible? Yes, siponimod is probably as good as all the other S1P modulators at preventing relapses.
This NHS trust doesn’t realise that they are putting themselves and their institutions at risk from a potential legal challenge. When NICE (National Institute of Health and Care Excellence) was created, it was done via an act of parliament. NICE aimed to eliminate the curse of postcode prescribing and variable treatment access. Therefore as siponimod has been NICE approved, the NHS has a legal obligation to offer people a specific treatment if they are eligible. Therefore, in the case above, her consultant is candid and saying I want our service to treat you, but we can't because of NHS resource issues.
This case needs to be put viewed against the backdrop of the current crisis affecting the NHS, which is primarily around staff recruitment and retention, investment in support services, lack of funding, and, to be honest, a lack of national joined-up strategy to deal with MS across the disease course. I discussed many of the issues relevant to this case in last week’s Newsletter on MDTs (24-Mar-2023).
This trust should stop seeing patients with progressive MS and only start seeing them when they have the appropriate resources. This is what one large NHS Trust is doing in London. This patient may ask her GP to refer her to another MS service, which creates bottlenecks in the system elsewhere. We would assess and manage patients like this in the past, but we and other centres can’t do this anymore. I mentioned that 60% of the patients at our centre on DMTs are out-of-area patients, and we are breaking under the current patient load. We don’t get paid by results, i.e. for each patient seen, but we get a block sum of money to look after patients in our patch and some money for out-of-area patients. So perversely, any extra patients we take on and see cost us money in resources consumed. This is why our managers want us to stop seeing out-of-area patients.
It takes a brave MSologist to call out their service and NHS Trust for not delivering care for their patients. If doctors don’t put their heads above the parapet to support their patients, who will? Whistleblowers tend to be given a hard time by the NHS. On this occasion, I would be surprised if this consultant’s NHS Trust freedom to speak guardian and the BMA did not support them. This neurologist has my support.
However, all this chest-beating does not necessarily help this patient, at least in the short term. I would advise them to write to their local member of parliament (MP) and contact the local newspaper and the BBC. Resources often magically materialise as soon as the politicians and press get involved. If this should fail, this patient may need a good lawyer. The good thing about being a person with a chronic disease living in a democracy is that you can rely on at least three of the pillars of democracy (politicians, press and judiciary) and sometimes the fourth pillar (law enforcement) to protect your human rights, which in Britain includes access to appropriate healthcare.
If the issues, in this case, have affected you, please share your experiences and thoughts with us. We need to start a national conversation on the under-resourcing of MS services in the UK and its impact on individuals with MS, their families and the morale of the NHS staff. Isn’t it time we did something about it?
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your own healthcare professional, who will be able to help you.
Gavin,
Again, again highlight another very concerning but common issue - the ability of MS teams to deliver care consistent with reasonable expectation and the pressure put on those teams.
There are many issues but I wish to emphasise 3:
1. Many people living with MS (PLwMS) do not fully know what they are entitled to, or what constitutes “best” or even reasonable practice. This is not a criticism of PLwMS. MS care is very complex but we need to be able to issue people with a clear document of reasonable expectations they should have of their service and Trust;
2. The complaints of PLwMS are subject to lip service internal local procedures. As such there is a divide and conquer culture and no cohesive process against which concerns are combined in a way that influences care at at national level.
3. Individual trusts appear to be weak patient advocates when it comes to fighting for resources. It seems Trusts would rather suppress individual who exposure Trust weaknesses, rather than be honest, candid and escalate the issue to NHSE or the DOH who are ultimately responsible for trusts delivering good care. For example, Trusts should support their clinical team by refusing to prescribe NICE approved drugs until NHSE/DOH provide appropriate resources.
I think it is time for PLwMS and MS teams to unite and fight. Otherwise…….
Jeremy Hobart
Plymouth MS team
Gavin,
I went to a lecture tonite by Jonathan Van Tam (JVT) about his role as chief medical officer during the height of the COVID pandemic.
JVT highlighted the importance of maintaining honesty, integrity, values, morals, principles, and personal ethics. these were general comments for all of us but within the context of clinicians and scientists.
I, and others, think the honesty is the UK MS care is generally poor, given our understanding from the science And what we know can be done.
This is the MS care paradox TMS4ALL has tried to highlight - every year there is more we can do for PLwMS, but every year there is less we actually do for PLwMS due to limitations in care delivery.
Lots of us have tried, and largely failed, to advance care locally. There is a need to influence, effectively, at a national level
This requires us, as an MS community, to unite and fight for national level level. Many healthy brain years are being lost.
At TMS4ALL we are trying to do that