Let's face it, although bland, the letter didn't start out that badly. A few generic sympathies, where, to be honest, any greater attempt at sincerity would have fallen flat. Clearly Paul Burstow doesn't know me from Adam, and pretending he did would have come off as false. I'm fine with the whole thing, up until this point:
In the past there was inconsistency around the country in the provision of services for epilepsy, which compromised the quality of treatment and reduced the options available to people living with epilepsy. That is why we need to improve commissioning, and clinical commissioning groups (CCGs) can help us involve patients much more in how local services are shaped.Our plans for the modernisation of healthcare services centre on a more localised NHS, with the NHS and CCGs working with patient groups, and making decisions based on a clear understanding of local need.
Now, clearly, the two paragraphs are not intended to contradict each other, but I can't help feeling that they do. Saying that inconsistencies should be a thing of the past, and then in the very next paragraph saying that "modernisation" will lead to a "localised NHS" strikes me as a bit... well, a bit stupid if I'm honest. I've yet to come across an organisation in which a focus on localisation hasn't led to inconsistencies.
At best, it will mean centres for epilepsy care dotted about the country where there are clusters of people with the condition. At worst, it would mean that more rural areas with low overall populations (and therefore more sporadic or scattered patients with epilepsy) will find that there is poor local access, because it isn't "needed" locally. Let's face it, the funds here aren't unlimited. You don't move to an area, tick a box which says "Yup, I need this care here now, please" and then it pops up magically out of thin air. Localised care works for some things. if you have an urban area with higher rates of violent crime, it makes sense to have, say, specialist surgeons who are adept at dealing with knife or bullet wounds, and more counsellors who can deal with the PTSD that often results in being attacked.
But epilepsy isn't handy and localised like that. It's random, and it can crop up anywhere, in anyone. Which means that, wherever in the country you are, there's likely to be someone, somewhere nearby, who needs that specialist care. "Localisation" becomes about as relevant as only supplying midwives "where they're needed" (and I'm not going to get started on that one).
I'll skip over the part about the Epilepsy and Related Conditions Bill for now. It's not that I don't care about those points, but that's a whole damn blog in itself. For now, I want to focus on the NHS aspect, since it was my main point.
Anyway, next up we have this lovely section:
Regarding Epilepsy Specialist Nurses (ESNs), the National Institute for Health and Clinical Excellence (NICE) has published guidelines that state:ESNs should be an integral part of the network of care of individuals with epilepsy. The key roles of ESNs are to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the individual, families, carers and, in the case of children, others involved in the child's education, welfare and well-being.However, local NHS organisations are responsible for the skill mix of their workforce, including provision of specialist nurses. They are best placed to assess the health needs of their local community and must have the freedom to deploy staff in ways appropriate to the local conditions.If Ms Hill wishes to raise concerns about the lack of SENs in her area, along with her concerns about waiting times for specialist appointments, I would recommend that she contacts the [Local Heathcare Trust].
Now, this can be taken one of several ways, although most of them are simply different flavours of "Not my problem". Essentially, the point being made here is that it is up to the Local NHS trusts to follow NICE guidelines, and not the central government. Well, guess what. They don't follow the guidelines - the fact that I got a letter the other day telling me my 'ESN' is still on long term sick leave so sorry, no appointment tells me that there is no real funding to provide adequate cover. And there never will be, until central government steps up to the plate and gives them an incentive. The local trust isn't made of money - they've all just had their budgets cut, essentially - so anywhere that corners can be cut, they will be. None of them are about to start spending money in the hope that it will result in long-term savings.
And as I said, what "local conditions"? It's not like all the people with epilepsy are happily living together in one tidy little town somewhere! This isn't a condition associated with any particular geographical or socio-economic conditions. It can affect anyone. So there are people with epilepsy up and down the country. And, by extension, there should be adequate epilepsy care everywhere, too.
Claiming that this is a local issue is, frankly, bullshit. I don't like swearing in my blog, but frankly there's no other word for it. I know from talking with other people around the country who have epilepsy that the provision in my HCT is better than average. It still doesn't meet NICE guidelines. One epilepsy nurse to cover a third of the county? No wonder she's ill.
At the end of the day, the Government probably isn't going to do anything to improve epilepsy care. Not because they can't, or because there are no workable suggestions that they could implement, nor because fiscal motivation is lacking (it would cost a heck of a lot less if everyone with epilepsy or a related condition had control over it and didn't need to keep using ambulances at approximately £150 a pop, and could also work instead of needing to claim benefits). No, the point of my lovely long letter was to explain to me that actually, the government wouldn't be doing anything to help because it didn't match up to their "vision" for the NHS. Because, you know what, getting appropriate healthcare means we actually need the NHS to be run as a national institution, with equal access to services everywhere, and darling, that's so not their thing.
