Adam Bojelian’s Campaign For Safe Epilepsy Care

Adam’s Campaign for Safe Epilepsy Care (ACSEC)

 

 

Is a campaign inspired by 13 year old Adam, known to many worldwide as AdsthePoet, the winner of multiple awards for writing poetry including the 2010 Brit Writers, Outstanding Achievement Award & A Gold Blue Badge and the lyricist of the Christmas hit Christmas Gibbons

 

 

You can follow Adam on twitter @Adsthepoet

 

 

and read his poems and learn more about his life here

 

 

http://intheblinkofaneyepoemsbyadambojelian.blogspot.co.uk/

 

 

Adam has lived all his life with intractable epilepsy.  He has had care and treatment for his epilepsy in several hospitals in the UK, all specialist children’s hospitals.This care has ranged from outstanding to awful.

 

 

The awful care seems in large part to arise from a real ignorance about epilepsy.  An ignorance of how dangerous severe seizures can be; a lack of ability to identify when Adam is having a severe seizure and a failure to follow available guidance, whether Adam’s epilepsy care plan written by an epilepsy expert or national guidance such as the NICE or SIGN guidance on the care and treatment of epilepsy.

 

 

http://guidance.nice.org.uk/QSD/25

 

 

http://www.sign.ac.uk/pdf/sign81.pdf

 

 

A 2002 investigation into epilepsy care “National Sentinel Clinical Audit of Epilespy-Related Death” found

 

 

Deficiencies in epilepsy care of 77% of children

 

 

and

 

 

“59% (13/22) of deaths in children were considered by the expert panel to have been potentially or probably avoidable”.

 

 

Adam does not want to add to these statistics, so his family is supporting him in this campaign to improve the care and treatment of children with severe epilepsy in the UK.

 

 

ACSEC has produced a 10 point charter, all based on Adam’s own experiences.

 

 

We hope you will support this charter and Adam’s call for the urgent improvement of care and treatment of children with severe epilepsy.

 

 

As you can see, most if not all of the charter points refer to an operational change being needed.

 

 

Help Adam make the UK’s hospitals safe places for children with severe epilepsy and help save children’s lives.

 

 

THE CHARTER

 

 

1. All kids with v. severe #epilepsy should have hospital care from PET trained nurses and doctors. #ACSEC http://www.bpna.org.uk/pet/

 

 

Rational: PET, Paediatric Epilepsy Training supported by the British Paediatric Neurology Association provides training at three different levels in epilepsy for nurses, doctors and others involved in the care and treatment of child epilepsy.  Nurses who have done the training talk of “how much they now realise they did not know”.  One of the greatest problems Adam and other children with severe epilepsy face is staff caring for him not recognising when he is having seizures; not knowing which seizures need treatment; and not knowing which seizures are potentially life threatening.  Nurses who have been PET trained are much better able to do ALL these things.

 

 

2.All kids severe #epilepsy should have support of epilepsy nurse specialists. http://www.esna-online.org.uk/

 

 

RATIONAL: Children who have access to an epilepsy nurse specialist have better co-ordianted care and their families feel better supported.  There is an epilepsy nurse specialist at the hospital Adam currently uses, but she is not involved in his care -Why?

 

 

3. All kids with severe epilepsy should have continuity of care when in-patients, not different doctors every week.

 

 

RATIONAL: Study after study has shown continuity of care is the key to safe care, yet more and more hospitals are introducing “consultant of the week” (“COW”) or similar schemes, so rather than seeing the consultant that has the expertise in epilepsy; has known the child for years and is aware of all the other aspects of the child’s care, the child is seen by the COW. The COW may or may not have specialist epilepsy expertise; may or may not know the child well and is very unlikely to know about wider aspects of the child’s health care.  He or she is often reluctant to change anything, so a child is left for weeks, unwell until his or her consultant is the COW.  Often there are different COWs at weekends/ bank holidays, leading to even less continuity.  Children with very complex conditions may have different COWs simultaneously, for example a medical COW and a neuro COW, risking a complete backdown in care.

 

 

4. All doctors caring for kids with severe epilepsy should know NICE or SIGN guidance and familiarise themselves with a child’s individual care plan.

 

 

RATIONAL: Expert guidance is available in the treatment and care of children with epilepsy.  In Adam’s experience too many staff are not aware even of its existence, let alone its content.

 

 

The importance of being familiar with a child’s care plan can be illustrated by Adam’s experience yesterday. Adam had a severe seizure first thing which did not respond to emergency treatment.  His individual seizure management care plan was in the folder on his bed. It said give second line emergency medication after 5 minutes if seizure continues.  Instead of following the plan staff bleeped the medical reg, who did not come to review Adam, as “he was not at that time in need of ventilation”; it took 1 hour and 30 minutes for second line emergency medication to be given,  Adam stopped seizing within 5 minutes of it being given.  If his care plan had been followed, Adam would have been saved the distress and danger of seizing for 1 hr and 30 minutes plus and his family would have been saved the distress of finding him alone, seizing, with low saturations, high heart rate and in great distress.

 

 

5. All docs prescribing Anti- Epilepsy Drugs should know side effects & assess risk. Docs & nurses should know risks for kids in their care.

 

 

RATIONAL: Anti-Epilepsy drugs are potent.  There is always a difficult risk/benefit analysis to be done.  Children with complex health needs are at greatest risks of adverse side effects from AEDs, both because they are likely to be on other medicines which may lead to adverse drug reactions and because their underlying health conditions may lead them to metabolise medication in unusual or unexpected ways.

 

 

Too often Adam has had severe adverse drug reactions which have not been picked up for many weeks because medics have been unaware of the potential adverse reactions or have assumed them to be so unlikely as to not be possible.  Greater awareness of these adverse reactions amongst all medics and nurses caring for children with severe epilepsy, would save Adam and other children, considerable avoidable ill health.

 

 

6. There should never be a door between a seizing child & his or her nurse.

 

 

RATIONAL: Time and time again we have walked into Adam’s hospital cubicle and found him in a very bad way having severe seizures.  Hospital staff claim he can be safely monitored by being alone in a cubicle attached to a monitor.  This leads to Adam being left seizing for long spells alone.  The monitor only goes off once the saturations have dropped or once the child is tachycardic.  No child should be left alone until that time.

 

 

Before the monitor goes off a child can bite his or her tongue; aspirate; hit his or head or the metal bed.  Healthcare should be preventative not reactive, relying on a monitor makes it reactive.  The problem is all the more acute when staff are busy so do not respond quickly to a monitor. or where staff adjust the settings of a monitor because it is repeatedly alarming.

 

 

A seizing child needs a nurse with him or her, not down the ward or corridor.

 

 

7. No child should be left alone following emergency medication for severe seizures.

 

 

RATIONAL: Adam has often been given emergency medication for prolonged seizures and then left alone in a cubicle.  The same points as in (6) apply here.  Also unless a nurse stays with the child the nurse will not know if the seizure has stopped  It may briefly stop and then re-start.

 

 

A child may also be at risk of stopping breathing and other adverse reactions following emergency medication.

 

 

8.Nurses should bleep the experts to avoid delays in care.

 

 

RATIONAL: Adam’s hospital insist he has his epilepsy care on the respiratory ward not the epilepsy ward.  Because he is on the respiratory ward, when Adam has a prolonged seizure that does not respond to emergency medication, nurses are told to bleep the medical reg not the neuro reg.  The medical reg. often does not appreciate the seriousness of severe seizures so delays attending or does not attend at all.  At best Adam waits over a hour for the medical reg who decides he needs the neuro reg.  At times Adam has had to wait several hours to be reviewed due to this organisational requirement.

 

 

9. Risks of severe seizures should be communicated to all docs & nurses caring for kids with severe epilepsy.

 

 

 

RATIONAL: In Adam’s experience too often no specialist medics and nurses are unaware of the risks associated with severe seizures.  Doctors fail to attend when bleeped; seizures are described as ” a few twitches” when a child is having a fall blown tonic/clonic seizure.  Medics often assume that emergency medication should only be given following cardiovascular compromise, not to prevent such compromise.

 

 

In professional circles there is alot of talk of making parents aware of the dangers of epilepsy, but many medics and nurses, also need to be taught these risks too.

 

 

10. Doctors & nurses should work in partnership with families & recognise their expertise. Good communication = good clinical care.

 

 

RATIONAL. In the words of one of the UK’s most senior and experienced child neurologists “parents are usually much better at identifying their child’s seizures than a doctor”.

 

 

Parents usually spend much more time with their child than any health professional and have cared for their child over many years.  Parents are also the ones that would have discussed their child’s epilepsy with the experts and indeed all aspects of their child’s health care with the relevant different experts.  They will know what is “normal” for their child.  They will know which seizures need treatment and which can be left untreated, without putting the child at risk.  Healthcare has to be provided in a context, that context being the child’s life,  Health professionals will know nothing about the child’s life if they don’t take the time to ask the child or his or her family about it.

 

 

Many parents whose children have very complex conditions are also very involved in voluntary organisations and/or professional bodies related to that condition.  At times, not only will they have more expertise on their own child than the individual health professional, unless the health professional is an experienced expert in the condition, many parents will also have more expertise in the condition generally, than most none specialist health professionals.

 

 

It can not be repeated often enoughGood communication = Good clinical care.

 

 

You can never make your care worse by not speaking to the parents and child, but you can make it considerably better.

 

 

 

Adam and his family hope you will support this campaign to improve the health care of children with extreme epilepsy in the UK.

 

 

Spread the word and improve the care.

 

 

Thank you!