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Campaign to save UK epilepsy specialist nurses - Government meeting

Epilepsy Action and the Joint Epilepsy Council have been lobbying the government on the threats to specialist nurse places.

Epilepsy Action meet with government minister over specialist nursing

Three neurological charities have struck a unique partnership with the Department of Health to support the future of the specialist nurse, whose role has increasingly become a soft target amid health budget cuts.

The MS Society, Epilepsy Action and Parkinson’s Disease Society have welcomed the backing of Ivan Lewis MP, Parliamentary Under Secretary of State for Care Services. This follows a summit held on Tuesday 1 May to highlight the vital role of specialist nurses in helping people with multiple sclerosis (MS), epilepsy and Parkinson’s disease.

The three charities joined together to seek support from the minister to promote specialist nursing, which potentially saves the NHS millions each year and is overlooked by some local health commissioners.

The Minister agreed that local health commissioners needed to better understand the direct and indirect benefits of specialist nursing.

He said: "Today's meeting was both informative and productive in understanding the role of specialist nurses and their contribution to ensuring the care that their patients receive is of a high quality and tailored to their needs.

“It was also an opportunity to hear about the value they add to local healthcare communities and the efficiencies they can make through their distinct approach.”

Now a guidance document will be prepared to outline best practice and educate health commissioners on the benefits of protecting the specialist nurse post. This will be launched at a national conference in early 2008.

Epilepsy Action has been funding epilepsy specialist nurses (ESNs) through its Sapphire Nurse Scheme since 1995. There are currently 185 ESNs in the UK; 83 of which are Sapphire Nurses.

Epilepsy Action Chief Executive, Philip Lee, said: “I am pleased that the important role the voluntary sector plays in providing services for people with long term conditions has been recognised and welcome the focus on specialist nurses.

“We are looking forward to working closely with the Department of Health to implement the outcomes of today’s meeting and to making a real difference to the lives of people with epilepsy.”

Ivan Lewis MP added: “I am pleased that we were able to commit to jointly working together to produce best practice guidance and information about the contribution available from the voluntary sector.

“Our aim will be to make the case for specialist nurses becoming mainstream in services available to people with long-term conditions."

If you have any queries about the specialist nursing summit please contact Pete Scott, Campaigns & Policy Officer, on 0113 2108877 or email pscott@epilepsy.org.uk 

Early Day Motion

John Battle MP has tabled an Early Day Motion calling on the government to improve epilepsy services.

We are hoping to get 300 or more MPs to sign early day motion 541. This is because it is possible that the early day motion will be debated in parliament if we can get this many MPs to sign it.

We are asking anyone with an interest in epilepsy to email or write to their own MP and ask them to sign early day motion 541. Most MPs take personal letters from their constituents very seriously, which is why we are asking you to take this action.

We are providing you with the suggested text for a standard email/letter below but if you have time you may wish to put it into your own words, which will make it even more powerful. You may want to include information about the role of the epilepsy specialist nurse; your concerns about the threat; and any examples of your personal experience of the epilepsy specialist nurses.

Suggested text:

As your constituent, I am writing to request that you add your name to Early Day Motion 541 on epilepsy specialist nurses. Services for people with epilepsy are currently under threat. Cuts in NHS funding have meant a threat to around five per cent of epilepsy specialist nurse posts across the UK. Jobs are being frozen and nurses are working reduced hours or spending part of their time on non-specialist duties.

Epilepsy specialist nurses are a crucial source of support and advice to the 456,000 people with epilepsy in the UK. They enable many patients to manage their epilepsy effectively and to remain independent in the community

These cuts are being considered despite the acknowledgement by the National Institute for Health and Clinical Excellence (NICE) of the importance of the role of specialist nurses. In its epilepsy guideline, NICE says that epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy.

I fear that if these posts are cut there will be a lack of in-depth, specialist knowledge of the complexities of epilepsy available for patients. As a result, local hospitals will not be able to fully meet the needs of local people. 

Early Day Motion 541 calls on the UK government to recognise the important role of epilepsy specialist nurses and its stated desire to see an increase in their number; and strongly encourages the Government to take steps to ensure that their policies as clearly set out in the National Service Framework for Long Term Neurological Conditions and the recent White Paper, Our Health, Our Care, Our Say are effectively implemented at local level.

I hope that you will consider signing EDM 541, and I also urge you to write to the Secretary of State for Health.

What should I do?

1. Find out if your MP has already signed the early day motion.

Look on the early day motion website. The list of MPs who have already signed it appears on the right-hand side. If you need to know who your MP is then visit writetothem.com and enter your postcode.

2. If your MP hasn't already signed the early day motion, then please contact them and ask them to do so.

You can instantly contact your MP through writetothem.com.

If you want to write a letter to your MP, the House of Commons website can tell you how to contact them.

House of Lords

In the House of Lords on 18 December, Epilepsy Action's president, Baroness Gould of Potternewton, asked the government:

"Whether they have acknowledged the contribution that specialist nurses make to the treatment and care of people with epilepsy; and whether they will take steps to reverse the trend of redundancies and reduced hours for specialist epilepsy nurses who work in the National Health Service; and

"What encouragement they are giving to local health trusts to reverse the trend of redundancies and reduced hours for specialist epilepsy nurses who work in the National Health Service, bearing in mind that 70 per cent of those with epilepsy could be seizure-free with optimal treatment."

Lord Warner, minister of state at the Department of Health, replied:

"It is for primary care trusts (PCTs) and strategic health authorities (SHAs) to analyse their local workforce needs and develop plans, in liaison with the providers, to deliver high quality services, including those for epilepsy, and take action to secure the appropriate staff and skills to deliver these services.

"The chief executive of the NHS, David Nicholson, wrote to all chief executives of SHAs, NHS trusts and PCTs on 30 October 2006, encouraging NHS organisations to work together to manage workforce change and minimise the need for redundancies.Mr Nicholson's letter launched a new framework from NHS Employers, Securing and Retaining Staff for Health and Social Care—A partnership approach, which outlines good practice and promotes local partnership working for the benefit of displaced staff."

House of Commons

In the House of Commons on 18 December, Chris McCafferty, Labour MP for Calder Valley, put questions to ministers in the Department of Health.

Chris McCafferty: To ask the Secretary of State for Health what guidance her Department has issued to primary care trusts with regards to implementing (a) the recommendations of the National Institute for Health and Clinical Excellence guidance on epilepsies and (b) the quality requirements of the national service framework for long-term conditions; and if she will make a statement.

Ministerial reply: We have not issued any guidance to primary care trusts (PCTs) for implementing guidance published by the National Institute for Health and Clinical Excellence on epilepsy. PCTs are expected to work towards implementing the national service framework for long-term conditions over a 10-year period.

Chris McCafferty: To ask the Secretary of State for Health (1) what assessment she has made of the contribution of specialist nurses to providing treatment and care to patients with (a) long-term conditions and (b) epilepsy; and if she will make a statement; (2) whether primary care trusts have a duty to record and monitor the number of patients in their area with epilepsy.

Ministerial reply: Specialist nurses provide a valuable additional resource in the treatment and management of many long-term conditions, including epilepsy. Primary care trusts have no duty to record and monitor the number of patients with epilepsy.

Chris McCafferty: To ask the Secretary of State for Health whether any primary care trusts have been referred to the Healthcare Commission for a failure to implement (a) the recommendations of the National Institute for Health and Clinical Excellence guidance on the epilepsies and (b) the quality requirements of the national service framework for long-term conditions.

Ministerial reply: Healthcare organisations are not referred to the Healthcare Commission for non compliance with National Institute for Health and Clinical Excellence (NICE) guidance or the quality requirements of national service frameworks.

All organisations providing national health service care are expected to be compliant with the 24 core standards set out by the Department in “Standards for Better Health” published in July 2004. Core standard 5a states that
“they conform to NICE technology appraisals and, where it is available, take into account nationally agreed guidance when planning and delivering treatment and care”.

In addition, organisations are expected to make progress against the 13 developmental standards in “Standards for Better Health”. Developmental standard 2a states that organisations should
“conform to nationally agreed best practice, particularly as defined in national service frameworks, NICE guidance, national plans and agreed national guidance on service delivery”.
The Healthcare Commission assesses NHS trusts, including primary care trusts (PCT), against the core standards as part of its annual health check assessment process. Results from the first annual health check assessment, in 2005-06, are available online.

There is a statutory direction requiring the NHS to provide funding within three months from the date of publication of NICE technology appraisal guidance. PCTs were last reminded of these obligations in a statement on the implementation of NICE guidance which the Minister of State for NHS Reform (Lord Warner) made in June 2004.

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