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Jeremy hobart's avatar

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

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Jeremy hobart's avatar

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

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