Epilepsy Specialist Nurse post - Hywel Dda University Health Board

14 Jun 2021

Epilepsy Action Wales are writing to the Chief Executive of the Hywel Dda University Health Board (UHB), calling on him to progress a proposal to appoint an extra Epilepsy Specialist Nurse (ESN) for the area. Hywel Dda UHB covers Carmarthenshire, Ceredigion and Pembrokeshire in South West Wales, and includes Bronglais, Glangwili, Prince Philip and Withybush hospitals.

We have had reports that people with epilepsy are waiting up to 18 months to see the neurologist at Hywel Dda UHB.

We know that ESNs are vital team members providing care to people with epilepsy. They work alongside consultant neurologists and other healthcare professionals to provide essential advice and support during and, as importantly, in-between appointments. ESNs can be a lifeline for people with epilepsy, helping with medicine, managing risks from seizures and supporting people to cope with daily life. They can also offer help with benefits applications, education and employment.

An additional ESN in the area would also help to increase Consultant Neurologist outpatient capacity to assess more urgent neurology referrals, reduce the numbers of emergency department attendances and hospital admissions due to improved preventative management of epilepsy, and reduce the increased mortality rate demonstrated in people with epilepsy where there is poor access to timely specialist services.

In addition to the letter from Epilepsy Action, we are asking members and supporters in the area to support our calls and write to the Chief Executive, Steve Moore. We have drafted a template letter you can download and send, either by email or by post, adding in any personal experiences of delays or problems accessing services in the area you have had.

If you have any questions, please do get in touch with our campaigns team on campaigns@epilepsy.org.uk

Download the letter

Download the letter (easy read version) 

Comments: read the 2 comments or add yours

Comments

Dear Ms Lee
Thank you for your email below. I have been asked to respond.
Whilst the Minister for Health and Social Services has a role to set the strategic direction for health and care services in Wales and hold the NHS to account, it is local health boards which are responsible for the planning and delivery of health services at a local level and for ensuring they meet the needs of the communities they serve. If you have any further concerns may I suggest you contact Hywel Dda University Health Board directly as they are best placed to provide you with a response. The details are available here: https://hduhb.nhs.wales/get-in-touch/

I hope this is helpful?

Hi All
I have 100% confidence in the Welsh Health Minister will do a fantastic job for the NHS. Due to the pandemic it has had in affect a detrimental consequence in many ways and its understandable a priority for Mrs Morgan navigate us through the pandemic cautiously. I'm awaiting to hear from Nia Griffiths my MP for Llanelli to respond to the Neuro pledge by email. Ms Griffiths please note has worked tirelessly campaigning for health reforms within Hywel Dda health board. For example keeping our A @ E department in Llanelli operating. Its been a life saver for most patients.

Ms Griffiths is aware of the neuro pledge. I have been campaigning for positive changes since 2019.

Keep positive, keep going everyone. Its frustrating for all of us but the more noise we make, the likely we will be heard as one united and not alone.

Reflecting on my experiences i have been epileptic all my life. I had my first seizure just aged 15 years old in 1993. I was discharged in 1994. I was finally diagnosed in 2018.

I feel your pain to

Submitted by Tammy Lee

Please read Mr Moore's immediate proactive response, an update where the Neuro Pledge is currently at. Please note we are still in the tail end of this horrific pandemic and all services have been an up hill struggle for our NHS, who has worked tirelessly across the board since March 2020. It has had a financially negative impact in every health board across Wales.

We are heading toward the right direction.........

A massive thank you to my MP Nia Griffiths for her input.

Ms Tammy Lee
Email to: tammylee35@hotmail.co.uk

Dear Ms Lee
Re: Epilepsy Services

Thank you for your recent letter, received at my office on the 15 July 2021, regarding the
provision of epilepsy services by Hywel Dda University Health Board (the Health Board).
I am pleased to hear that we have been able to address the concerns you raised
previously regarding the Health Board’s Neurology Department and I am also grateful to
you for sharing your current concerns.

In regard to the provision of epilepsy services, the Health Board currently employs two part
time Band 6 Epilepsy Clinical Nurse Specialists (CNS), who have delivered epilepsy
services throughout the COVID-19 pandemic. In addition, the Health Board works in
collaboration with Swansea Bay University Health Board, to ensure patients have good
access to epilepsy services.

In response to the pandemic, a single point of contact was created. The epilepsy service
contacted all patients on its lists, offering them open access through the single point of
contact via the Epilepsy CNS.

Furthermore, I am pleased to inform you that the Health Board has agreed to fund a Band
6 Learning Disabilities Epilepsy Specialist Nurse (ESN) and a Band 7 Paediatric ESN.
These posts will be advertised shortly.

The Health Board does not currently have plans to appoint a Band 7 Adult Epilepsy Nurse.
However, under the ARCH programme (A Regional Collaboration for Health), there is work
being undertaken to consider neurological services, with the view of strengthening the
delivery of epilepsy services regionally. The planned work under the ARCH programme
includes:
 Creating a functioning regional epilepsy service through closer working. Accordingly,
the two Epilepsy CNS from the Health Board now attend the Swansea Bay UHB Multi Disciplinary Team meetings for support and advice.
 A business case is being developed for the recruitment of a further epilepsy nurse,
although the funding for this role and its banding are yet to be determined.
 The Consultant job role will further support the inpatient service, to reduce waiting
times for specialist appointments and improve the processing of patients within the
system.
The regional work being undertaken through the ARCH programme will allow epilepsy
patients earlier access to support. It will also facilitate greater patient/carer support and
improved patient outcomes and experience, creating a more sustainable service.
I am unable to confirm the current wait times for access to services, as epilepsy forms part
of the wider neurology service, which is recorded as a whole, rather than by condition.
However, I can inform you that the neurology service has developed a recovery plan,
which aims to recover all clinical conditions within 18 months and to return to delivering
treatment under the Welsh Government’s 36-week referral to treatment time target.

I trust this information will be of assistance to you. However, if you require further
information, then please do not hesitate to contact me once more.

Yours sincerely

Steve Moore

Submitted by Tammy Lee
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