The Purple Star PracticeThe Purple Star PracticePromoting equitable health care for people with learning disabilities in Hertfordshire. Supporting best practice.

Produced by: The Community Learning Disabilities Nursing Service For Health Professionals in Hertfordshire

Learning Disability and EpilepsySpring Edition, 2015

EditorialEditorialHello and welcome to the spring 2015 issue of the Purple Star Practice. In this issue, our Community Learning Disability Nurses focus on Epilepsy. The magazine is packed with interesting articles, case studies and resources to help you in supporting adults with a learning disability, with a focus on Epilepsy.

Firstly, I’d like to introduce myself – my name is Susie Banks, and I am the new Information Quality Officer with the Health Liaison Team at Health & Community Services. As part of this role, I have become the new editor of the Purple Star Practice. It’s an exciting new venture for me and I look forward to the challenges ahead.

I am already familiar with the Epilepsy Specialist Nursing Service at Hertfordshire County Council, having been their administrative support officer since August 2012. Prior to this, I worked as a business research specialist in the private sector, before taking a career break to raise my family.

With our two long-standing Epilepsy nurses having recently retired, we would now like to welcome our two new Epilepsy Specialist Nurses to the service: Steph Miragliotta who is covering the East of the county in a permanent role, and Debbie Harris who is temporarily covering the West of the county. They are both experienced Community Learning Disability Nurses.

This issue is packed full of useful and interesting articles about Epilepsy. As well as our now regular centre page ‘Resource Pack’ with easy-read sheets and Makaton signs, for health professionals to use when working with a patient with a learning disability, who also has epilepsy. They are designed to help with communication and understanding of epilepsy terms, seizures, side effects, medication.

Did you know?Epilepsy is more common in people with a learning disability than in the general population.

• About 30% of people (nearly 1 in 3) who have a mild to moderate learning disability also have epilepsy.

• The more severe the learning disability, the more likely that the person will also have epilepsy.

• Around 20% of people (1 in 5) with epilepsy also have a learning disability.

Source: Epilepsy Actionhttps://www.epilepsy.org.uk/info/learning-disabilities

By Susie Banks

Information Quality Officer,

Health Liaison Team.

Our lead article is by our Epilepsy Specialist Nurse Steph Miragliotta, and is all about Learning Disability and Epilepsy.

We are grateful for James Rosborough’s article about his experience of having a learning disability and epilepsy. He provides a service user perspective that is very valuable.

The training team also provide an interesting feature called ‘Epilepsy & Me’ about a recent training programme designed for service users in Hertfordshire. The programme was run over 6 weeks to help support people with learning disabilities to learn more about their epilepsy, enable them to feel empowered and make reasonable adjustments to their epilepsy care.

I hope that you enjoy this issue of the Purple Star Practice, and find the information and articles to be of great interest and use.

In This IssueIn This Issue

Meet Our New Epilepsy Specialist Nurse (ESN)Steph Miragliotta joined the Epilepsy team in February this year. Find out about her in this interview by Alison Fitzgerald.

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Rectal Diazepam versus Buccal MidazolamLinda Farquharson writes about the growing change towards Midazolam being used as the favoured rescue medication for seizures.

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The Hertfordshire Epilepsy Training TeamThe training team provide epilepsy courses to paid carers and staff in Hertfordshire.

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Epilepsy ClinicsDebbie Harris, Epilepsy Specialist Nurse, interviews the doctors at Hertfordshire’s learning disability epilepsy clinics.

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Train Your BrainTrain your brain with our fun Brain Maze.

Epilepsy Word Search

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Ask AlisonOn our letters page, Strategic Lead Nurse Alison Fitzgerald answers your questions on epilepsy.

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Epilepsy and MeRead all about a recent training programme for people with learning disabilities who have epilepsy.

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James Rosborough’s Journey with Epilepsy An article by a Hertfordshire service user’s experience of having epilepsy.2

Learning Disability and EpilepsyOur lead article is by Steph Miragliotta, on how making reasonable adjustments can assist in accurately diagnosing and treating individuals with learning disability and epilepsy.

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Page:

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Resource PackThe resources pack is designed to support you as a health professional to make reasonable adjustments ensuring that people with a learning disability can access your services effectively. The pack has a wealth of easy read and Makaton materials to support patients with epilepsy. The Epilepsy Specialist Nursing Service leaflet is also included in this pack.

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Steph Miragliotta,Steph Miragliotta, Epilepsy Specialist Nurse Epilepsy Specialist Nurse The frequency of epilepsy occurring in people with a learning disability is higher than in the average population. Approximately 30% of people with a learning disability will have epilepsy and this figure rises to 50% in those who have a severe learning disability.

There needs to be recognition by professionals working with these groups of the additional complexities in accurately diagnosing and treating these individuals.

NICE (2012) stress the importance of an accurate diagnosis in those with a learning disability. A full and accurate clinical history must be obtained and as professionals we often source this information via family and carers. Within the remit of our job role as Community Learning Disability Nurses and Epilepsy Specialist Nurses we provide education and training to families and carers to ensure they have the necessary skills to recognise and record seizures.

Liaison between the many professionals (GPs, neurologists, psychiatrists) to ensure a fair and equitable service is delivered is a role we undertake.

It can be difficult to diagnose epilepsy in people with a learning disability for a number of reasons.

• Communication – Those with a learning disability can present with additional communication needs and therefore find it difficult to provide relevant history in relation to seizure experience and presentation. This results in reliance on families and carers to provide in-depth clinical history.

• Seizure Activity – Can often be confused with cognitive, behavioural or motor problems.

• Compliance – For accurate diagnosis and management of Epilepsy various tests need to be undertaken. Compliance and understanding of these tests can be difficult and we need to allow extra time and input to ensure there is a clear understanding. Where there is evidence that there is not we need to consider and use the Mental Capacity Act 2005.

Therefore the management and accurate diagnosis should include reasonable adjustments by all professionals working with those with a learning disability. This should ensure that those with learning disabilities have the same access to treatment as everyone else.

We need to afford each individual

• Time – It may be necessary to offer a longer appointment or give consideration to offering an appointment at the beginning of a busy clinic or towards the end.

• Environment – Individuals often find it difficult to attend appointments in busy hospital clinics. Consideration may need to be given to a smaller clinic or a home visit.

• Attitude – recognition of the individual with Epilepsy as the person receiving care. Talking to the individual, giving them the opportunity to engage in the appointment and seeking their consent when asking others to relay information on their behalf.

• Communication – As discussed above, communication can be a difficulty. We need to consider the best way for each individual to deliver the relevant information on that person’s epilepsy. Perhaps a pre-appointment questionnaire, easy read information leaflets and easy read care plan sent to the individual following their appointment.

• Help – To ensure that we offer the same opportunity to those with a learning disability as a non-disabled peer with epilepsy. They may need additional help with appointment and more resources to allow this to happen.

People with a learning disability are, as discussed above, much more likely to have epilepsy than their non-disabled peers. Epilepsy is a common cause

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of death for people with learning disability. It is agreed that it is more difficult to diagnose in this group of people and often the epilepsy is poorly controlled.

Traditionally, those with a learning disability have had less access to specialist services and have not been candidates for VNS (Vagus nerve Stimulation). NICE (2012) state that people with learning disabilities should be offered the same services, investigations and all therapy options will be explored.

Specialist learning disability nurse role within this is to ensure collaboratively with other professionals and carers and creating a clear pathway for an individual with learning disability who has Epilepsy.

References

1. NICE (2012) The Epilepsies: The diagnosis and management of the Epilepsies in adults and children in primary and secondary care. http://www.nice.org.uk/guidance/cg137 [Accessed March 2014]

2. Reducing premature mortality in people with Learning Disabilities: Effective interventions and reasonable adjustments http://www.england.nhs.uk/wp-content/uploads/2014/09/info-ld-interventions.pdf [Accessed 4th March 2015]

3. Epilepsy Action (2013) A Critical Time for Epilepsy in England

4. Public Health England ( 2014) Making reasonable adjustments to Epilepsy Services for people with learning disability

5. Kerr M et al (2009) Consensus guidelines into the management of epilepsy in adults with an intellectual disability, Journal of Intellectual Disability Research; 53: 687-694

6. Mencap, Epilepsy and learning disability www.mencap.org.uk

Remember to use the acronym T.E.A.C.H to help you make Reasonable Adjustments.

James Rosborough’sJames Rosborough’s Journey with EpilepsyJourney with Epilepsy

James has used his own words with support from his carer Andy Cooke (Shared Lives Scheme)

James is forty four and was diagnosed with epilepsy when he was six years old and has a mild learning disability. He has spent most of his life in specialist centres for epilepsy, including 21 years at the NSE (National Society for Epilepsy), Chalfont.

James moved to Ware in Hertfordshire in December 2010 as part of the Shared Lives Scheme run by the Guideposts Trust and now lives, with the support of a family, in a beautiful two bedroomed terraced house. James can have seizures at night and on waking and so a bed monitor alerts a dedicated mobile and the family landline to a seizure. The family house is very close to James’ new home.

The journey has been difficult and there have been periods of increased seizure activity often followed by huge medication hikes.

James has had 12 hospital admissions, to 4 different hospitals that resulted in 3 weeks in Critical Care followed by 6 weeks back at NSE Chalfont to rationalise medication. This was a very challenging time for all concerned with James’ care. Throughout this time the Specialist Epilepsy Nurse in Hertfordshire was brilliant. However the acute hospital had difficulty in listening to advice from this nurse.

James is now enjoying life and has been seizure free for a year. He is doing voluntary work, growing his own vegetables on his allotment, pops into his local pub, is planning to help others that are lonely via a Connect project and is waiting to hear about a paid job at a local Day Centre.

James is now living a real life, using his own skills to make a valuable contribution to his own local community.

3rd March 2015

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Epilepsy & MeEpilepsy & MeA Training Course for People with Learning Disabilities‘Epilepsy and Me’ is a short training programme developed for people with learning disabilities and epilepsy who live in Hertfordshire.

The course was delivered by the training lead and the Health Liaison Team practitioner in the east of the county. The programme was designed to support people with learning disabilities to learn more about their epilepsy, enable them to feel empowered and make reasonable adjustments to their epilepsy care. Courses are presently being delivered for paid carers in Hertfordshire, but there are no learning opportunities for people with learning disabilities who have epilepsy.

The first ‘Epilepsy & Me’ course was delivered over 6 weeks during February-March 2015. Each session used materials to support learning in a simple, age appropriate and non-patronising way. Work sheets and easy read information were developed to maximise concentration and support memory recognition. Prior to the development of this course, the Training Lead had attended a one day course at the Chalfont Centre (PEPE - Psycho-educative epilepsy programme for people with learning disabilities).

At the start of the course a pre-intervention assessment was administered with each participant asked to identify what information they knew about epilepsy.

This included 6 questions about epilepsy:

1. Where does epilepsy start in the body?

2. What happens when a seizure /fit starts?

3. A trigger can make me?

4. I have to take tablets to?

5. When should I take my epilepsy medication?

6. How often should the doctor check my epilepsy when I am well?

This assessment was repeated at the end of the course. Evidence from the pre and post assessments indicated that participants did increase their knowledge of epilepsy at the end of the course, and that participants felt more confident to talk about their epilepsy. All participants completed an evaluation form which has shown that they all enjoyed the course and would like to attend more training in the future. The course will be delivered again in the west of the county in September 2015.

by Linda Farquharsonby Linda FarquharsonClinical Nurse Specialist/Training Lead

Participants receiving their certificates March 2015

From the left:- Marie, Natasha and carer, Charlotte, Linda, John J, Maggie and John S

If you have a patient with a learning disability who would like to take part in this programme please contact Linda Farquharson: linda.farquharson@hertfordshire.gov.uk

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Rectal Diazepam versus Rectal Diazepam versus Buccal MidazolamBuccal Midazolam

for People with Learning Disabilities

Historically rectal diazepam has been used as the first line emergency treatment medication for people with learning disabilities who have epilepsy.

Rectal diazepam has been a well-established and effective treatment of prolonged seizures/serial clusters and has been the only treatment option and the only licensed medication for this use.

Rectal diazepam has several shortfalls and difficulties in its administration. Carers who provide support to people with learning disabilities constantly raise issues about its administration including inconvenience and social embarrassment.

Experiential evidence suggests that some carers are reluctant to administer in a community environment due to the physical nature of removing clothing in public and the route of its administration. It is also reported that there are lifting and handling issues. Lifting people out of wheelchairs to administer rectal diazepam may cause injury or harm to both the person having a seizure and the supporter. This practice is outdated and is not in the best interest of the individual.

Buccal Midazolam has been used in epilepsy since 1997 and has had a gradual introduction in to adults with learning disabilities. Buccal Midazolam is still unlicensed and therefore local NHS Trusts use individual patient care plans, along with shared protocols to safely manage its administration. According to studies with children, there is no difference in the effectiveness or risk of adverse effects between buccal and rectal diazepam. Additionally, evidence shows that Buccal is effective as diazepam.

Buccal midazolam can be used in public without an individual’s dignity being affected and has practical advantages of ease and social acceptability in administration.

Within Hertfordshire there is a gradual migration from prescribing of rectal diazepam to buccal midazolam, as the medication becomes more favourable within care services. Shared care between the specialist and the general practitioner (GP) is preferable however the doctor who prescribes the medication legally assumes clinical responsibility for the drug and the consequences of its use.

The Community Learning Disability Nursing Service favours the use of buccal midazolam over rectal diazepam due to its effectiveness as a rescue medication for epilepsy and that an individual’s dignity and respect can be more easily maintained during administration. The nursing team has considerable experience in epilepsy due to the high incidence of epilepsy (30%) in the learning disability population. This enables the CLDN to provide expert advice about the most suitable treatment and intervention for the individual with epilepsy based on their needs.by Linda Farquharsonby Linda FarquharsonClinical Nurse Specialist/Training Lead

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Train your brainTrain your brain

Be AmazingAmazing... Put Your Grey Matter to the Test

Find Your Way Through Our Brain Maze!!

The following pages are designed to support you to make reasonable adjustments that enable individuals with learning disabilities and arguably those from other vulnerable groups to access services more effectively.

They include Makaton signs and symbols about Epilepsy to aid communication with individuals. Our regular easy read information leaflets for use with your patients include information about What is Epilepsy, Epilepsy Triggers, Side Effects of Epilepsy Medication and a Glossary of Epilepsy Terms.

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Epilepsy

Seizure

Doctor

Epilepsy Nurse

Epilepsy Clinic

Resource PackMakaton - EpilepsyMakaton - Epilepsy

HOSPITAL

HEALTH CENTRE

Index fingersindicate

increasedelectrical

activity

Index fingersindicate

increasedelectrical

activity

With index finger and thumb, mime

taking pulse

Index fingersindicate increasedelectrical activity

Index fingersindicate increasedelectrical activity

Thumb trace cross on outsideof arm

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Reso

urce

Pac

kMakaton - EpilepsyMakaton - Epilepsy

Medicine

Headache

Fall

Seizure chart

Blood test

EEG

Stir medicine: little finger makes

circular movement just inside the top

of other fist

Shake hand over forehead

Run index finger across lips

Right hand flows over

left hand once. Sign once only

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Resource PackMakaton - EpilepsyMakaton - Epilepsy

Recovery(sleepy,

drowsy etc)

Safe

Confused

Breathing difficulties

Breathe

DifficultTwist thumb

Blade of right cupped hand moves from left finger tips onto palm

Hands move back together to touch body

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What is Epilepsy?What is Epilepsy?

Doctors do not always know why people have epilepsy.

Some people are born with epilepsy.

People use different words when they aretalking about their epilepsy. For example: seizures, fits or funny turns

Seizures start in your brain and affectthe way the brain works

Some people feel dizzy and confused andmight wander around

Some people throw their arms into the air ortheir legs and arms might go stiff

Words

Reso

urce

Pac

k

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Some people may fall down, and their body may go floppy.

Then they may shake and jerk

After the seizure has stopped theymay feel unwell or tired for a short time

Epilepsy may be controlled by medicine

Medications should be takenin the way your doctor tells you to.

Individuals should tell their Doctor if theepileptic medicines make them feel ill orif they forget to take them

Keeping a note of seizures can be helpful.It can show how well medicines are working andhelp the Doctor to decide if less or moremedicines are needed

Resource Pack

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Epilepsy TriggersEpilepsy Triggers

Stress/anxiety A fever

Not getting enough sleep Flashing lights

Missing a dose of epilepsy medication Too much alcohol

Not taking epilepsy medication on time

Poor nutrition/ refusing meals

Epileptic medicines mixing

with others

Menstruation/hormonal changes

Reso

urce

Pac

k

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Side Effects of your Epilepsy MedicationSide Effects of your Epilepsy MedicationPlease tick if you have any of these:Please tick if you have any of these:

Common Side EffectsYou must tell your doctor straightaway if you have

any of the following:

Tiredness Feeling Confused

Weight Changes Memory Problems

Headache Agitated/ Aggressive

Dizziness Rash or Blotches on you skin

Feeling Sick Problems with Balance

Resource Pack

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Glossary for Epilepsy TermsGlossary for Epilepsy TermsAnti Epileptic Drug (AED) The old term was Anti Convulsant - A medicine that doctors prescribe to peoplewho have epilepsy

Annual Review - All adults over 18 should have a yearly review with their GPOr Epilepsy Specialist (NICE 2012)

Diazepam (emergency medication) A medicine that doctors prescribe to people with epilepsy to help stop a seizure

EEG (electroencephalogram) A test used to help diagnose epilepsy which records electrical activity in the brain

Epilepsy A medical condition where there is a tendency to have seizures that start in the brain

Midazolam (emergency medication) A medicine that doctors prescribe to people with epilepsy to help stop a seizure

Reso

urce

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k

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NICE guidelinesBest practice guidance for the care andtreatment of epilepsy including medication

Seizure Diary A diary/chart to record when the seizures happen

Side effects When a medication makes some physical, mental or emotional changes that is not wanted

Status Epilepticus A term that describes when seizures don’t stop or one seizure follows another

SUDEP (Sudden Unexpected Death in Epilepsy) Sometimes a person with epilepsy dies during or following a seizure for on obvious reason

Trigger A trigger is a situation that can bring on a seizure in some people with epilepsy. For example bright flashing lights or physical illness

Resource Pack

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The Epilepsy Specialist Nurses can:

• Give you expert advice and support about your epilepsy and healthcare

Epilepsy Specialist Nursing ServiceEpilepsy Specialist Nursing Service Part of Health & Community Services

• Provide you with up to date information

• Work with you and others to treat and manage your seizures

• Assess your needs for specialist equipment that will help you and your carers manage your seizures

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• The Epilepsy Specialist Nurses (ESN's) are core members of the Specialist Learning Disability Service Epilepsy Clinic

• Help you to use My Purple Folder

• Give you advice and help with your medication

• Support you to contact the right health services for your needs

• Provide training about epilepsy and seizure management

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The Epilepsy Specialist Nursing Service will:The Epilepsy Specialist Nursing Service will:

• Receive referrals from anyone

• Always treat you with respect

• Respond within 1 working day for urgent referrals and within 10 working days for non urgent referrals

• Allocate you a named Epilepsy Specialist Nurse

• Work together with others to get the best healthcare outcomes

• Offer you a Purple Folder

• Give you expert help and advice about your epilepsy and health

• Agree a Care Plan and review it often to make sure it is helping you

• Act to protect you from harm

Abuse hurts. If you are worried that you or someone else is at risk of abuse call 0300 123 4042

Contact us: 01442 453017 Monday – Friday 9:00 to 5:00Epilepsy.referrals@hertfordshire.gov.uk

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Why did you apply for the ESN post? Throughout my career I have worked with many individuals with Epilepsy. I have recently undertaken an advanced course in Epilepsy to consolidate my knowledge and ensure that my skills are up to date.

I have always had a keen interest in epilepsy and how it affects people’s daily lives within the learning disability field, communication of an individual’s experience of epilepsy can be difficult to ascertain. The role of learning disability professionals is to work together with family and carers to extract relevant information to ensure the best treatment and management of individuals Epilepsy. I am enthusiastic about developing the Epilepsy service to ensure good communication between the many individuals working with those who have a learning disability and epilepsy.

Can you tell us a little about your background? I completed my nurse training in Ireland and qualified as a registered nurse in learning disability in 1997. I worked in Ireland during the initial stages of moving individuals from long stay hospitals into the community before moving to Hertfordshire where I worked in an assessment and treatment unit for 13 years.

I have been a Community Learning Disability Nurse in the North Herts and Stevenage Community Learning Disability Team for the past three and a half years working with individuals who have communication difficulties, challenging behaviour, dementia and mental health issues.

What are your priorities for the next 6 months? Working alongside the other ESN, I hope to develop a clear pathway through our epilepsy service.

I would like to develop links with Neurology services and devise a clear pathway for individuals with learning disability accessing this service.

Co-working with GP’s, neurologists and consultant psychiatrists to ensure smooth delivery of care for our service users.

How are you going to make links with local health professionals? As part of the GP link role which Community Learning Disability Nurses undertake, I plan to make initial face to face meetings with GP surgeries to introduce myself and my role within learning disability and Epilepsy.

I will be working closely with my learning disability nurse colleagues.

Close working relationship with the learning and development lead to ensure delivery of a robust, effective and up to date Epilepsy Training pack is delivered.

Can you tell us some of the ways you will support carers? Development of a clear pathway through our service is essential to providing reassurance to the families and carers of our service users. This will inform carers about the expectations they should have about our service and how we can help.

Providing advice and support at clinic appointments.

Follow up after clinic appointments to ensure information has been received and acted upon. Signposting to relevant professionals or community teams .

Producing easy read information on seizure types, medications, professional roles.

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Meet Our New Epilepsy Specialist Nurse (ESN) Meet Our New Epilepsy Specialist Nurse (ESN) Steph Miragliotta Steph Miragliotta

An interview by Alison Fitzgerald

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The Hertfordshire CLDN The Hertfordshire CLDN Epilepsy Training TeamEpilepsy Training Team

Linda FarquharsonLinda FarquharsonClinical Nurse Specialist/Training Lead

Epilepsy Training is a mandatory training requirement for all staff and paid care staff who work with people with learning disabilities in Hertfordshire.

People with learning disabilities are ‘adults at risk’ and have additional needs in relation to rescue medication including rectal diazepam and buccal midazolam. The Joint Epilepsy Council (JEC) states that all staff who work on a day-to-day basis with service users who are prescribed rescue medication, must receive training. The JEC sets out training standards for epilepsy trainers and guidance in training content. CQC (Care Quality Commission) in Hertfordshire monitor staff training profiles to measure standards of care.

The training team provide epilepsy courses to paid carers who work with people with learning disabilities in Hertfordshire.

The training team are designated highly skilled Community Learning Disability Nurses/Specialist Epilepsy Nurses who are currently working in clinical practice and have an advanced level of expertise in epilepsy. The Epilepsy Trainers attend accredited courses in the ‘Management and Diagnosis of Epilepsy’ degree module before they can deliver the epilepsy training programme, or become part of the epilepsy training team.

Clear standards are in place for epilepsy trainer competency and professionalism, which is monitored by the training lead. All new trainers will shadow more experienced trainers to gain competency and consistency in delivering the epilepsy programme. Trainers will always follow the JEC guidelines that set the standards for the delivery of Rectal Diazepam and Buccal Midazolam medication.

The courses are designed to provide delegates with an understanding of Epilepsy, seizure types and the risks associated with this condition.

Delegates receive theoretical information on the Administration of Buccal Midazolam and Rectal Diazepam and have the opportunity to practice the administration of rescue medication using an anatomical model and role play.

The training team trained 687 paid care staff from 2013 to 2014.

Providers can request training via Hertfordshire County Council workforce development department training referral process. Three courses are presently delivered:-

1. Epilepsy Introduction (full day)

2. Epilepsy ½ day Refresher

3. Epilepsy Refresher (Theory Only)

(2013) Joint Epilepsy Council of the UK and IrelandA Guideline on the Training Standards for the Administration of Buccal Midazolam Leeds.

(2004) Joint Epilepsy Council of the UK and IrelandA Guideline on the Training Standards for the Administration of Rectal Diazepam Leeds

Four members of the training team

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The Learning Disability Epilepsy ClinicsThe Learning Disability Epilepsy ClinicsThe epilepsy clinics for people with a learning disability are well established across Hertfordshire. The clinics are run by Consultant Psychiatrists who work for Herts Partnership University NHS Trust, Specialist Learning Disability Services. The clinics are supported by the Epilepsy Specialist Nurses and Community Learning Disability Nurses who are part of Health & Community Services.

Each consultant was asked the question ‘Why is it important to have a specialist (LD) epilepsy clinic?’Dr Sonika Bhasin (Consultant Psychiatrist)

I strongly believe that people with learning disability should receive quality of care. They often present with complex needs and refractory epilepsy. This can be further complicated with mental health and behavioural problems. However in a specialist epilepsy clinic, service users get a holistic approach to the management of their epilepsy and other complex needs. This can be a struggle in a mainstream clinic, a person centred approach might be difficult to attain.

Dr Bhasin runs the epilepsy clinic at St. Pauls in Hemel Hempstead on the 2nd and 4th Friday of the month (mornings).

Dr Paul Bradley (Consultant Psychiatrist)The needs of people with a learning disability are not easily met by generic neurology services. Reasonable adjustments can be made more easily, for example a regular clinic is held at a local nursing home as most service users are unable to attend the clinic. Service users who attend the clinic receive a streamlined service where other needs are met, not just epilepsy. The clinic is supported by an Epilepsy Specialist Nurse and adheres to NICE guidance.

Dr Bradley runs the epilepsy clinic at Albany Lodge, St. Albans on the 1st, 3rd and 5th Friday of the month (mornings).

Dr Kamalika Mukherji (Consultant Psychiatrist)Epilepsy presents more frequently and has a more complex presentation in people with intellectual disabilities. The clinic at North Herts is held at Baldock Health Centre twice a month and also provides outreach support and home visits. The clinic is multi -disciplinary with medical input from a learning disability Psychiatrist and Epilepsy Specialist Nurse. For a number of years, Neurology colleagues at the Lister hospital have provided liaison and a second opinion for complex cases and also serve a teaching/training function. My vision would be to see more formalised links with Neurology and tertiary services.

Dr Mukherji runs the epilepsy clinic at Baldock Health Centre, Baldock on the 2nd and 4th Tuesday of the month (afternoons).

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Dr Alaa Al-Dabbagh (MBCHB, MRC Psychiatrist)Because of the complexity of these service users’ problems, those who are seen at our clinic, usually have refractory epilepsy in addition to mental health or behavioural problems. This entails easily, the identification of speech and language therapy or psychology input. Some of these service users also have a physical disability which can impact negatively on seizure control, for example, service users with severe scoliosis might have repeat chest infections leading to an increasing number of seizures while in ill health. This makes the need for occupational therapy and physiotherapy input necessary. Their needs once identified, are easily dealt with through the community learning disability team rather than the generic pathway.

Dr Al-Dabbagh runs the epilepsy clinic at Rosanne House, Welwyn Garden City on the last Thursday morning of the month.

Dr Mohamed Sathick (Speciality Doctor) East HertsEpilepsy is common in adults with learning disability, and is often severe and intractable. There is also high prevalence of co-morbid mental health and physical health issues in this population. This, often presenting together with communication difficulties, make the assessment and treatment process lengthy and challenging to monitor potential side effects from AEDs in this population. This necessitates a need for holistic assessment from specialist team.

In East Herts specialist epilepsy service for learning disabilities, our team comprises of Consultant Psychiatrist, Speciality Doctor, Epilepsy Specialist Nurse and Community Learning Disability Nurses. We are involved in all part of the journey for learning disability service users and carers who wish to avail our services. We have locally accessible clinics, and provide a responsive service for our service users. In effect, we work in close liaison with community assessment and treatment services and community learning disability teams, GP’s, local Neurologists, Neuro- Physiologists and also with epilepsy tertiary services.

Our aim to provide expert assessment and treatment strategies to achieve adequate seizure control, and in promoting quality of life for our learning disability service users with epilepsy and their carers.

Dr Sathick runs the epilepsy clinic on the 1st Thursday of the month (afternoon). Dr Asif Zia runs a clinic in parallel and both clinics are held at Ware Road Day Services in Hertford.

Interviewed and written by Debbie HarrisInterviewed and written by Debbie HarrisEpilepsy Specialist Nurse (West Herts)

To refer to one of the epilepsy clinics, contact Single Point of Access on Tel: 0300 7770707

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Dear Alison

Can you confirm the eligibility criteria for the Epilepsy Nursing Service as I recently made a referral that was not accepted as the young man I was referring had Aspergers?

Dear Alison

Can you advise how the Epilepsy Nursing Service can support us with the care and management of rescue medications for prolonged or repeated seizures in individuals with learning disabilities?

Ask AlisonAsk Alison

Do you have a question for our Strategic Lead Nurse? If you have any questions about our service or the practice of supporting people with a learning disability then drop a line to Alison.Fitzgerald@hertfordshire.gov.uk

Dear Colleague Thank you for your question. I can confirm that the Epilepsy Nursing Service is for adults aged 18 and over who have learning disabilities and epilepsy. The service is provided by specialist learning disability nurses who have advanced training in epilepsy but who are not commissioned or equipped to offer services to those individual’s without learning disabilities. I hope this clarifies the situation for you.

Yours sincerely Alison

Dear Colleague

Following receipt of all referrals initially, a specialist nursing assessment is undertaken. This looks holistically at the individual but has an emphasis on epilepsy. This assessment is undertaken in liaison with the individual, family and/or carers and other stakeholders. As part of this assessment medication is reviewed along with the appropriate medical officer (this may be a GP, Neurologist or Consultant Psychiatrist via Epilepsy Clinic). Epilepsy Specialist Nurses (ESN) will ensure that rescue medications are prescribed and that protocols for the administration of these are completed. This involves drafting guidelines in liaison with the prescriber and others to ensure the optimum treatment is offered in line with NICE clinical guidance. ESN’s will support all involved in the care and management of the individual regarding the implementation of these guidelines and will advise regarding any specific training needs.

Yours sincerely Alison

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Can you find these epilepsy-related words in our word search?The words to find are highlighted in bold below, and can be found horizontally, vertically or diagonally in the puzzle.

Epilepsy Awareness Word SearchEpilepsy Awareness Word Search

References: Epilepsy Action www.epilepsy.org.uk Epilepsy Specialist Nursing Service, leaflet (February 2014)

1. In the UK there are over 600,000 people with EPILEPSY

2. There are many different types of SEIZURE. A seizure can start by a burst of intense electrical activity in the brain

3. A commonly used term for seizure is a FIT

4. One type of anti-epileptic drug is called MIDAZOLAM which helps stop a seizure in an emergency

5. Another emergency anti-epileptic drug is known as DIAZEPAM

6. People can take anti-epileptic MEDICINE to control their seizures. They don’t cure epilepsy, but can help keep seizures under control

7. Epilepsy starts in the BRAIN. When a seizure starts, the epileptic activity causes a temporary disruption to how the brain works

8. A type of seizure is known as TONIC CLONIC – this is where the whole of the brain is involved and consciousness is lost, it is the most dramatic form of generalised seizure

9. A seizure MONITOR can be installed under the mattress to alert carers if a person is having a fit in their sleep

10. A fall ALARM can be placed on the floor , alerting carers if a person falls out of bed whilst having a seizure

11. The Epilepsy nurse can order specialist EQUIPMENT to help monitor seizures

12. An ASSESSMENT by a specialist can work out which is the best anti-epileptic medication based on the seizure types and frequency

13. The specialist will write up a set of GUIDELINES to give advice when to take the emergency medication

14. Many people’s epilepsy is well-controlled with the right TREATMENT

15. Sometimes there can be SIDE EFFECTS caused by the rescue medication. These can include headaches, dizziness, drowsiness, feeling sick, mood changes

16. The Epilepsy Specialist Nurse can offer ADVICE about epilepsy

17. The Epilepsy Specialist Nursing Service can supply INFORMATION leaflets about epilepsy, such as the NICE Guidance.

18. Carers can receive TRAINING on how to administer medication, identify seizure types

19. People with epilepsy should have an annual REVIEW to discuss their seizures and medication

20. In Hertfordshire, service users are offered a PURPLE FOLDER which contains information sheets about epilepsy for carers and health professionals to look at

21. It’s a good idea to keep a DIARY of seizure patterns to show a health professional, this can assist in getting the right medicine

22. If epilepsy is new or complicated a person can be referred to NEUROLOGY

23. There are Epilepsy CLINICs held regularly in the East, North and West of the County

24. Sometimes certain TRIGGERS can cause a seizure, such as stress, excitement, anxiety

25. An Epilepsy SPECIALIST can assist with diagnosis, treatment and advice

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Epilepsy Awareness Word Search

 

 

 

C   W  O   T   Z   A   E   Y   P   Q   M   E   D   I   C   I   N   E   Y   G   A   U   M  A  Z   L   R   C   F   S   B   W  U   R   O   W  X   N   Y   P   Y   R   A   I   D   L   I   S  E   R   I   S   C   I   U   K   L   C   N   L   H   F   Z   A   W  N   S   E   V   A   F   S  Q   A   S   N   Q   Y   T   T   E   P   I   Y   N   O   M   I   Z   T   E   T   I   G   B   E  U   C   M   R   I   B   E   A   J   I   T   P   L   R   A   E   I   F   Z   G   C   H   R   S  I   W  N   O   T   C   E   P   D   E   O   I   B   M   T   R   P   Y   A   N   E   E   T   S  P   T   E   B   A   N   K   G   L   M  R   W  O   A   V   U   E   B   N   M  D   I   T   M  M  O   Q   S   V   B   T   I   U   Z   E   R   H   T   I   Z   E   I   S   L   T   B   M   E  E   R   S   T   Q   A   Z   B   K   I   L   T   M   I   N   I   Y   P   O   K   H   R   I   N  N   W  A   C   N   I   M   T   O   P   D   K   R   O   B   E   G   F   M  N   Y   A   O   T  T   I   V   E   N   K   D   A   Q   T   N   E   Y   N   S   S   E   I   Z   R   U   I   E   R  A   C   B   F   N   M   P   I   L   F   V   D   L   A   W   L   Y   X   M   E   I   N   F   H  W  Y   A   F   S   Z   E   P   A   I   L   E   S   I   P   Y   T   R   I   G   R   S   E   L  Q   G   S   E   T   I   M   L   E   Z   U   N   B   R   N   O   C   F   D   H   U   I   S   T  V   O   P   E   H   F   N   W   S   I   E   T   U   O   M   E   P   K   A   D   I   G   B   P  B   L   X   D   Q   W  A   R   T   B   M  P   L   K   A   B   S   C   Z   O   R   N   Z   T  N   O   T   I   S   T   W  U   P   L   N   Z   A   R   V   F   H   I   O   R   T   I   B   R  M   R   Y   S   R   E   G   G   I   R   T   M   A   M  A   V   Z   Q   L   T   O   N   H   E  Q   U   E   A   T   V   H   I   M   T   P   N   U   L   Z   I   B   J   A   G   M   I   P   A  A   E   P   I   L   E   P   S   Y   M   Z   I   P   E   O   L   T   P   M  O   K   A   L   T  S   N   V   L   E   P   S   Y   X   R   B   T   M  U   Z   H   I   K   L   R   A   R   V   M  D   A   X   P   E   Z   A   I   D   A   Y   N   O   T   K   U   J   F   I   N   W  T   P   E  F   S   P   S   P   E   C   I   A   L   I   S   T   V   W  M  E   T   Z   E   N   R   S   N  G   Q   W  D   R   G   Y   H   U   A   K   O   L   C   I   N   O   L   C   C   I   N   O   T    

Epilepsy Awareness Word Search

Solution

 

 

 

C  W  O  T  Z  A  E  Y  P  Q  M  E  D  I  C  I  N  E  Y  G  A  U  M  A  Z  L  R  C  F  S  B  W  U  R  O  W  X  N  Y  P  Y  R  A  I  D  L  I  S  E  R  I  S  C  I  U  K  L  C  N  L  H  F  Z  A  W  N  S  E  V  A  F  S  Q  A  S  N  Q  Y  T  T  E  P  I  Y  N  O  M  I  Z  T  E  T  I  G  B  E  U  C  M  R  I  B  E  A  J  I  T  P  L  R  A  E  I  F  Z  G  C  H  R  S  I  W  N  O  T  C  E  P  D  E  O  I  B  M  T  R  P  Y  A  N  E  E  T  S  P  T  E  B  A  N  K  G  L  M  R  W  O  A  V  U  E  B  N  M  D  I  T  M  M  O  Q  S  V  B  T  I  U  Z  E  R  H  T  I  Z  E  I  S  L  T  B  M  E  E  R  S  T  Q  A  Z  B  K  I  L  T  M  I  N  I  Y  P  O  K  H  R  I  N  N  W  A  C  N  I  M  T  O  P  D  K  R  O  B  E  G  F  M  N  Y  A  O  T  T  I  V  E  N  K  D  A  Q  T  N  E  Y  N  S  S  E  I  Z  R  U  I  E  R  A  C  B  F  N  M  P  I  L  F  V  D  L  A  W  L  Y  X  M  E  I  N  F  H  W  Y  A  F  S  Z  E  P  A  I  L  E  S  I  P  Y  T  R  I  G  R  S  E  L  Q  G  S  E  T  I  M  L  E  Z  U  N  B  R  N  O  C  F  D  H  U  I  S  T  V  O  P  E  H  F  N  W  S  I  E  T  U  O  M  E  P  K  A  D  I  G  B  P  B  L  X  D  Q  W  A  R  T  B  M  P  L  K  A  B  S  C  Z  O  R  N  Z  T  N  O  T  I  S  T  W  U  P  L  N  Z  A  R  V  F  H  I  O  R  T  I  B  R  M  R  Y  S  R  E  G  G  I  R  T  M  A  M  A  V  Z  Q  L  T  O  N  H  E  Q  U  E  A  T  V  H  I  M  T  P  N  U  L  Z  I  B  J  A  G  M  I  P  A  A  E  P  I  L  E  P  S  Y  M  Z  I  P  E  O  L  T  P  M  O  K  A  L  T  S  N  V  L  E  P  S  Y  X  R  B  T  M  U  Z  H  I  K  L  R  A  R  V  M  D  A  X  P  E  Z  A  I  D  A  Y  N  O  T  K  U  J  F  I  N  W  T  P  E  F  S  P  S  P  E  C  I  A  L  I  S  T  V  W  M  E  T  Z  E  N  R  S  N  G  Q  W  D  R  G  Y  H  U  A  K  O  L  C  I  N  O  L  C  C  I  N  O  T    

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Contacts: Telephone: 01438 845372 Email: nursingnewsletter@hertfordshire.gov.uk Web: www.hertsdirect.org Follow our service on https://twitter.com/HertsCLDS Twitter: @HertsCLDS and #purplestarpractice

Staying safe in the sun and dysphagia

Epilepsy Specialist NursesWe welcomed Steph Miragliotta into her new role as Epilepsy Nurse Specialist following the retirement of previous colleagues, also Debbie Harris who is temporarily undertaking the role as a professional development opportunity. They can be contacted on 01442 453017

Thames Learning Disabilities Nurses ForumThe Hertfordshire Community Learning Disability Service hosted the Thames Nurses Forum on the 5th March 2015. The forum aims to provide an opportunity for learning disability nurses to share best practice and network across the region. A successful event, the service shared many examples of creative practice including the development of our newsletter.

Working in partnership with GOSHOn the 11th March our Strategic Lead Nurse and members of the Transition Team gave a presentation at the “Making Change Happen” conference Great Ormond Street Hospital. The service has been sharing innovation that supports the developments of care pathways for young people with learning disabilities.

Purple Star Strategy The Welwyn and Hatfield Purple Star Project Team will be taking part in the local “HealthFest” to be held on the 13th June 2015 in Welwyn Garden City town centre. Come and find out all about the strategy and which services are signing up for the purple star accreditation process in the area.

May Events During May the service will be marking International Nurses Day on the 12th (Florence Nightingale’s Birthday) with a local celebration, and National Epilepsy Week 2015 - during 17th - 23rd May 2015.

“ Shine” 7th July 15 To help raise awareness of the need to stay safe in the sun the Cheshunt Purple All-Stars are delivering a creative event for adults with learning disabilities, their families/carers and health professionals. The event will have interactive art displays illustrating important issues about using high sun factor sun care products, wearing sun glasses and sun hats, keeping hydrated and how to safely chill out on holiday.

Why not drop in between 10 – 3pm at The Beaufort Suite, Bishops College, Cheshunt ENX 9XGFor more information call Kate Harding on 07580 743851

Facebook Project The Purple Star Strategy Project will be launching our Community Facebook Page at the end of May 2015! We are working with health providers to improve health services for people with learning disabilities Connect with us on Facebook – give us a ‘like’ as an easy way to find out what is happening On Facebook, just search for ‘Purple Star Strategy’

Love Yourself, Love Your Life EventsOver 100 people with learning disabilities and their carers attended two Love Yourself Love Your Life (LYSLYL) events in February. Hosted by Community Learning Disability Nurses (CLDNs) these events aim to raise awareness about the Annual Health Check, offering the opportunity for individuals to attend workshops about various aspects of the check. Now in the third year, the events that were well evaluated were held in Harpenden and Welwyn Garden City. LYSLYL is a part of the wider CLDN strategy to improve access to equitable health care services.