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.