Well thanks for that...

I got a somewhat long letter today, forwarded to me by my MP. It's from Paul Burstow, about my letter regarding epilepsy care. Interestingly, she declined to comment on its contents, saying they 'spoke for themselves'. I'll see if you agree. Apologies in advance for what will be a long post...

Dear My local MP,
Thank you for your letter of 28 October to Andrew Lansley enclosing correspondence from your constituent J. Hill of address about epilepsy services. I am replying as the Minister responsible for policy on long-term conditions. 

I was sorry to read of Ms Hill's condition, and I can understand her interest in seeing improved services for people with epilepsy.  

We know that there are historic weaknesses in the commissioning of services, to which the epilepsy charities and stakeholders have drawn attention in recent reports, correspondence and Parliamentary Questions.  

As Ms Hill is aware, the urgency for change is all the greater because these failures carry huge costs, as well has having a massive impact on the lives of people with epilepsy.  

There are also potentially very significant savings from unplanned emergency admissions to be made by getting this right, which go hand-in-hand with improvements in outcomes, including life expectancy and a reduction in the number of tragic sudden deaths from epilepsy.  

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.  

To commission effectively, CCGs must understand the needs of patients with epilepsy, their families and carers. To do so, they need the support and expertise of patient groups to inform and advise them. Epilepsy charities have worked to highlight failings and raise concerns about the education needs of children with epilepsy.  

With specific redard to the Epilepsy and Related Conditions Bill, the principles behind it are at odds with the focus on outcomes and devolution of decision making at the heart of the Government's reforms. it envisages an old-style command-and-control mechanism that directs every locality to commission specific services in very specific ways. However, our stated aim is to support, empower and trust professionals, such as teachers, to do what they do best, rather than prescribe or dictate from the centre.  

The proposal to make epilepsy a Special Educational Need (SEN) would also undermine the Government's Green Paper response to an Oftstead report that highlighted misidentification of SENs. It would also suggest a particular response by schools to children's impariments at a time when the Government is emphasising that schools should be freed to use their professional exzpertise to respond to children's needs in a way that they feel is best.  

The proposals in the Epilepsy and Related Conditions Bill would promote a 'medical model' of SENs, with the implication that children would need a medical diagnosis to access a specific package of support rather than looking at each individual child, the particular nature of their difficulties and their edcuational need and social context before deciding on the support they need.  

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] The contact details are:  

[Contact details and paragraph informing me about PALS and appropriate contact details for them] 

I appreciate that this reply may be disappointing, but I would like to assure Ms Hill that the Government is wholly commited to improving the lives of those with epilepsy and of those who look after them. 

Yours sincerely
Paul Burstow.

So there you have it. I'd like to keep my opinions and response to this for another entry (this one is long enough already), but feel free to share yours in the comments below.

Married life, and other things.

To be honest, it's pretty much identical to life before, except that now I have a stack of Thank You cards to write, and a lot of paperwork to fill out to change my surname. I guess that's a slightly contentious issue to some people these days, and while I don't personally feel it's a choice I have to defend, I seem to have found myself explaining it a few times over the last few weeks. Several people have asked whether I would or not. At the end of the day, it boils down to the fact that I want the same surname as O and M for convenience. I personally think that most double-barrel names get clunky in the end; what if O or M wanted to double-barrel their name again - would they then have the awkward task of choosing a name to drop? I worry too much about that sort of thing, although I quite like the sound of other people's longer surnames.

Anyway. So, for me, the double-barrel option was out. Asking W to change his name was something I didn't even consider, mostly because it would sound ridiculous. Honestly, you'll have to trust me on this one. So that left me with changing my surname, which suits me just fine - my new surname is nice, and flows just as well with my name. Plus, I get to keep "Hill" for writing purposes, which I always knew I wanted to anyway. Essentially, I get the best of both worlds.

Still. That's not my sole, trivial point for the day. I still haven't had an appointment for Dr. Neuropsychology, although I might not get one - I had a letter today saying I might simply be referred for CBT. (More on that another time.) I'm still having seizures fairly frequently, although thankfully not several times a day. The wedding was clearly a big source of stress, which is obviously  over, but I am still not in a position where anyone is going to want me working for them. If this is my baseline, and I know that working increases the number of seizures I have, that's a non-starter. Three or four times a week at least is no good for people, especially just for a part-time employee.

I've also had a nice fat form from ATOS in the post, for me to fill out and prove I'm still ill. What joy. I must admit, when I first opened the letter and saw who it was from, my heart skipped a beat. ATOS do not have a good name among people who claim benefits relating to ill health and disability, predominantly because they appear to be skewed in the favour of slashing the number of awards, rather than assessing people fairly. I don't really have the energy to explain the whole debate here, but I will point you in the direction of blog outlining some of the more serious concerns. It's an interesting read, although the topic is certainly worth researching for yourself, because it affects one heck of a lot of vulnerable people across the country, and a long-term illness or disability could affect anyone you know, or even your future self.

I try not to get too emotive and biased about things any more, because I don't think that kind of argument ever really resolves anything - it just descends into "sob stories" that people dismiss as individual cases or overly subjective. But I do and will continue to encourage people to look at these issues more closely than they otherwise might. Very rarely is the overview of a situation as accurate as the full picture, and very rarely, in my opinion at least, is the story presented on the news and in the papers anything other than an overview, often one which is slanted to give weight to a particular point of view.

Stalling

I've been stuck, the last few weeks, stuck on a repeat loop where nothing ever really improves. Nothing's getting worse, either, but when you get to the point where you're thinking that's a good thing, you know life has taken a fairly rubbish meander. In other words, it sucks.

I'm still cracking on with the things I need to do - wedding planning, house organising (with the help of W - we bough a bookcase for our DVDs the other day which he assembled. When we had got them all in we wondered why we hadn't done it before...), and child rearing. All the "ing"s. All except for "improving".

My seizures are still on average happening once a day, usually afternoon/evening time. I think I went a day without a few days ago, but, really? That's nothing special. A year or so ago I was hoping that someday I might get my driving license back - now it's looking more like a pipe dream with every day that passes.

To get my license back, I would have to go a whole year without seizures, then apply to the DVLA, who would check with my GP and specialists to make sure this is true, and then I'd have to go through the rigamarole of updating my details and getting it back. All without having any seizures at all. Any time I have one, even a "little" one, I go back to day one of my 365 point countdown.

Then, of course, even if I did get it back, I'd have to re-hone my driving skills. It has been six years since I last drove anywhere. Would you trust me behind the wheel? I certainly wouldn't. In the even this happens, I will be getting a couple of driving lessons as a refresher.

Actually, I'm going to stop dwelling on this one. I'm starting to remember how it feels to have the freedom of a car, and it's just making me miss it all the more. I get by well enough with public transport. It will get better when M can walk and we don't need a buggy. And better still when W can drive, assuming we can afford a car. At least we have family nearby who can help us if we really need transport at non-bus-friendly hours.