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Campaigning for a Sapphire Nurse - Action plan

Action plan

Convince the neurologist, convince the trust.

The most powerful ally you can have in the whole process is a neurologist or paediatrician who want a Sapphire Nurse.

There is a great shortage of consultant neurologists in the UK. As a result, most are overworked and are keen to have additional resources such as a Sapphire Nurse. However, it may be that the neurologist is not aware of the Sapphire scheme.

The business plan

The first step is to write to the neurologist outlining the scheme and asking for their help in convincing the trust of the need for a Sapphire Nurse. You must also ask the neurologist if they are prepared to produce a business plan for a Sapphire Nurse. If the neurologist is not able to produce a business plan for whatever reason, then you will have to enlist the help of someone from within the PCT in order for them to produce a business plan.

It is difficult here to be specific about who to contact within the PCT about producing a business plan as job titles vary from one PCT to another. It could be the Manager of Specialist Nurses, the Director of Community Nursing, the Children’s Services Manager or the Commissioning Manager to name but a few. The neurologist should be able to tell you the best person to contact. If not, contact the Sapphire Scheme Co-ordinator at Epilepsy Action. Tel: 0113 210 8800. Email: sapphire@epilepsy.org.uk.

Getting the trust to agree

Once the business plan outlining the need for a Sapphire Nurse has been produced, it is sent to Epilepsy Action and to the trust. The trust needs to be convinced of this need and have to give a written undertaking to fund the post once pump priming by Epilepsy Action ceases.

If the business plan is well written and contains details of appropriate guidelines and statistics, the trust will be convinced of the need for a Sapphire Nurse. However they may still not agree to appoint a nurse, as they are not prepared to commit to ongoing funding. This may be because of a shortfall in available funding, or that epilepsy is not in their Local Delivery Plan (see below). This is when the real lobbying begins.

Local Delivery Plan (LDP)

Each of the 28 Strategic Health Authorities in the UK has an LDP. This is a combination of plans drawn up by various bodies including each National Health Service Trust (for example PCTs) within the geographical area of the Strategic Health Authority. The plans are completely updated every two years, with year three of the existing plan becoming year one of the new plan. The LDP includes locally agreed health service priorities and methods by which national targets can be met.

Writing to the PCT

In the first instance, you need to encourage as many people as possible to write to the PCT in order to convince them to agree to recurrent funding for the nurse.

The people to write to are:

  • Chairman of the Board of the PCT
  • Chief Executive of the Board of the PCT
  • Chief Executive/Chairman of the Professional Executive Committee
  • Director of Nursing Services
  • Director of Commissioning

The letter should include statistics of how many people within the geographical area of the PCT have epilepsy. These statistics are available for each PCT from The Sapphire Scheme Co-ordinator at Epilepsy Action. This can be followed by saying that Epilepsy Action recommends that a Sapphire Nurse has no more than 200 to 250 people with active epilepsy to care for.

The letter should also include extracts from the NICE Clinical Guideline 20 pointing out that the PCT is not currently meeting this requirement.

National statistics can also be included. Again this is available from the Sapphire Scheme Co-ordinator.

In the case of Epilepsy Action branches who are campaigning for a Sapphire Nurse, you may decide to invite the person to a branch meeting. This would give you the opportunity of telling the person first hand just how much difference a Sapphire Nurse would make.

It may help your case if you were able to convince the PCT that having an epilepsy specialist nurse service would in the long term save money rather than being an additional expense. To date, no official figures have been produced on the financial savings that a Sapphire Nurse can make to the trust/PCT. However it is indisputable that Sapphire Nurses save money. For example, freeing up consultants’ time, freeing up hospital bed space and reducing A&E admittance. These points could also be mentioned in the letter.

Finally, include specific questions in your letter about the PCT’s intentions and make it clear you would like a response to your letter.

Who else can help?

Your local Patient and Public Involvement (PPI) Forum should be able to help. PPI Forums are a key vehicle for raising awareness of the needs and views of patients and the public.

There is a PPI Forum for every acute trust and PCT. They are made up of local people and have new powers. The forums play an active role in health related decision-making within their communities. To find details of your local PPI Forum, visit www.cppih.org/ppi_new.html.

Local radio, TV and newspapers can all help by raising awareness of the shortage of epilepsy services. Details of how to contact the media and what to say can be found in the main Campaigning for Better Epilepsy Services section.

Your local MP could also be a valuable ally. The MP can write letters to the media and to the various trust members mentioned in the Writing to the PCT section. Details of how to contact your local MP can also be found in the main Campaigning for Better Epilepsy Services section.

Remember

The Sapphire Scheme Co-ordinator at Epilepsy Action oversees the application for Sapphire Nurse funding from start to finish. It is therefore important to keep him informed of each stage of the campaign. Likewise, he will be able to update you on how each application is progressing and alert you to any potential problems.

A Sapphire Scheme information pack for applicants is available from Epilepsy Action. Tel: 0113 210 8800. Email: sapphire@epilepsy.org.uk

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