Epilepsy Scotland Consultation Response. Scottish Ambulance Service Our Future Strategy Discussion with Partners. Submitted September 2009

Transcription

1 Epilepsy Scotland Consultation Response Scottish Ambulance Service Our Future Strategy Discussion with Partners Submitted September 2009 Section 1: Accessing the right help in an emergency How can we work together to improve patient access to the right emergency help? How can we better share resources? What are the practical considerations for implementation? Single clinical decision support tool Epilepsy Scotland agrees with the importance of consistency in the triage of patients needs, whether through NHS 24 or 999. We agree with the idea of a single clinical decision support tool if appropriately designed. We support the idea of measures which avoid unnecessary attendance and hospital admission for people with epilepsy. Epilepsy Scotland recommends that the SAS work with Epilepsy Scotland and A&E/Neurology departments to create the best protocol for call handlers concerning epilepsy calls. Calls assessed as involving prolonged seizures must be responded to by personnel who are able to administer emergency epilepsy medication if necessary.

2 The model outlined in the consultation document proposes a further paramedic clinical assessment or nurse clinical assessment in some cases. We would ask that the SAS work with Epilepsy Scotland in establishing and fulfilling the training needs of those carrying out such assessments of calls relating to epileptic seizures. In general, Epilepsy Scotland feels that any new care pathway regarding seizures should be as short and simple to follow as possible, leaving less potential for error. Emergency Epilepsy Medication Epilepsy Scotland recommends that the SAS considers training all three levels of emergency response personnel on administering emergency epilepsy medication. The timely administration of emergency epilepsy medication considerably reduces patient morbidity and mortality and can prevent the need for hospital admission. Epilepsy Scotland believes such a move would help fulfil the SAS s objectives to provide treatment at home more frequently for patients with long-term conditions and reduce the number of unnecessary journeys to hospital. We believe that in the longer term it would save lives, time and money. Epilepsy Scotland would be happy to work in partnership with the SAS in addressing this issue and could offer our expertise in developing appropriate training protocols. Patients with epilepsy refusing treatment whilst in an ictal/post-ictal state Epilepsy Scotland asks that attention be given to the problem of patients with epilepsy refusing treatment or refusing to go to hospital whilst in an ictal or postictal state. We are aware of cases where someone with epilepsy has refused further treatment while in a confused, post-ictal state and emergency service staff have terminated treatment accordingly, to the detriment of the patient s health. Whilst we agree with the SAS that unnecessary hospital journeys are undesirable, there is a clear need for paramedics, ambulance technicians and first responders to recognise when people are in such states and act in the patient s best interests. They must be able to ensure the person still receives appropriate treatment,

3 particularly when terminating treatment or not taking them to hospital could risk a person s life. Non-Serious criminal acts committed by patients with epilepsy Similarly, Epilepsy Scotland recommends that the SAS address the issue of people with epilepsy committing non-serious criminal acts which are directly linked to their seizure activity, while being treated by paramedics, technicians and first responders. Understandably, Paramedics have adopted a zero tolerance approach towards abuse from members of the public. However, recognition is not always given to those who may be acting during or post-seizure. The consequences of this can be a protracted court case, anxiety, depression and family conflict and consequently poor seizure control. Although most of these cases are eventually dropped, the legal process may take up to a year or more to conclude. Sometimes the individual is urged to plead guilty in order to reduce the stress of a pending court case; however, this leaves the person with a criminal record. This can be a particular problem for people with temporal lobe epilepsy and would include incidents such as resisting a paramedic or urinating in an ambulance whilst in a post-ictal state. We feel it would be more appropriate for the SAS to take an approach like that adopted for dealing with similar incidents occuring when someone is having a hypoglycaemic episode. Section 2: Delivering for remote and rural healthcare How can we develop our current role in the provision of emergency care? Given the unique challenges faced by remote and rural communities, how can we share resources to improve emergency care services? What additional skills and infrastructure would we need?

4 Epilepsy Scotland recognises the challenge in responding quickly to calls for emergency healthcare in rural areas. We agree that a transfer to hospital is not always the most appropriate action to take for the patient. We would urge the SAS to work with us in developing appropriate models for responding to calls for emergency healthcare which involve epileptic seizures. We believe it is imperative that all calls involving prolonged seizure activity are responded to by personnel who are able to administer emergency epilepsy medication if necessary. As outlined in the consultation document, there are different levels of emergency response personnel used in different geographical/population density areas. In rural areas volunteer First Responders can attend a patient and provide life support ahead of the ambulance arriving. We recognise the value of this approach but are concerned about the lack of treatment First Responders and Ambulance Technicians are currently able to give those experiencing life-threatening seizure activity. The prompt delivery of emergency epilepsy medication to those with prolonged seizure activity reduces the risk of brain damage and morbidity and may avert admission to hospital. Currently, like Ambulance Technicians, First Responders are unable to administer such medication. Training on epilepsy for both First Responders and Ambulance Technicians appears to include recognition of Status Epilepticus as a medical emergency, but does not enable them to do anything other than position the patient to avoid injury, make sure their airway is unobstructed and administer oxygen at 6/L per minute. Epilepsy Scotland recommends the SAS considers training First Responders and Ambulance Technicians when and how to administer emergency epilepsy medication. Epilepsy Scotland currently delivers such practical, accredited training to almost 2,000 professional care staff, parents and other carers each year in the form of our Managing Difficult Epilepsy course. We would be happy to develop a training toolbox, working in partnership with the SAS and to the benefit of both organisations.

5 Evidence already exists that intervention with emergency epilepsy medication at the scene greatly reduces the likelihood of a patient requiring hospital admission. In NHS Grampian, the Epilepsy Specialist Nurse and Community Learning Disability Nurses deliver training to professional carers on the administration of emergency epilepsy medication. A recent audit of the service found that, following a written protocol, carers intervened over 200 times administering such medication, which resulted in 193 patients recovering at home without admission to hospital. Only seven of these interventions resulted in hospital admission and this was due to the medication failing to stop seizure activity. Epilepsy Scotland also recommends consideration be given to training First Responders and Ambulance Technicians on using Buccal Midazolam as a first line emergency medication, it being less invasive than Rectal Diazepam or Paraldehyde and carrying a lower risk of respiratory depression than other Benzodiazepines. Section 3: Getting patients to and from hospital What services should the PTS deliver? We agree that a collaborative approach to getting patients to and from hospital, which could make use of non ambulance transport services, could be beneficial for people with epilepsy. It would be important, however, that those providing the service were trained in epilepsy awareness and seizure fist aid. This would ensure patient safety and help allay anxiety that people with poorly controlled epilepsy might have about travelling to hospital in a non ambulance setting. Many people with epilepsy are unable to drive due to their seizures. Whilst a majority of these people are able to travel to see their consultant on public transport if available to them, some are unable to for various reasons including the following:

6 Those with intractable epilepsy are more likely to have a learning disability and cognitive or psychosocial impairment which may mean they are unable to safely use public transport. Epilepsy is frequently seen as a co-morbidity or consequence of a brain injury or condition which causes limited mobility and makes someone unable to use public transport or indeed private transport which has not been specially adapted. The person may have a mental health problem or learning disability where the anxiety of having a seizure on public transport is too overwhelming and may prevent them from travelling. Anxiety itself can trigger seizures. Indeed, it is likely that somebody with epilepsy may be journeying to seeing their neurologist because their seizures have become more frequent or troublesome. The problems may be exacerbated in rural areas where journey times can be long or involve more than one mode of transport. Some people with poorly controlled epilepsy may wish to use the PTS in order to travel to hospital in a safe environment with someone who can act appropriately if they have a seizure. This would also make them more likely to attend follow-up appointments. Section 4: Enhancing the care we provide How can we build on the existing models of care currently available to patients, for example, extending the work of community paramedics? What role could we have in managing long-term conditions at home? What skills do we need to develop Community paramedics & managing long term conditions at home Epilepsy is such highly specialised condition which demands great continuity of care. It is difficult to see how help from the SAS would fit into in a non-emergency situation, other than perhaps to offer advice about first aid or seizure triggers or

7 offer to reassurance. This, however, is normally the domain of an epilepsy specialist nurse. A person might ask to see their GP out of hours if they had lost their anti-epilepsy medication and urgently needed a replacement prescription. It may be that staff with enhanced training and access to computerized medical records at an Out of Hours Hub may be able to help in this situation. There are no epilepsy-related tests which can or should be done in a home setting by non-specialist staff. The combination and dosage of anti-epilepsy medication prescribed is finely balanced and tailored to each individual. A person with epilepsy would go to see their GP for a general annual review or if their seizures worsened but even a GP would not alter their medication and would refer them back to a neurology consultant. Emergency Epilepsy Medication Whilst Diazepam is commonly used by paramedics as first-line emergency medication, Epilepsy Scotland would recommend giving consideration to training paramedics in the use of other forms of emergency medication such as Midazolam and Paraldehyde. This may enable them not only to administer the most appropriate emergency medication for the situation but to give medication which may be on the premises and has already been prescribed for the patient. There is an apparent lack of education of carers regarding care plans/protocols and what information should be given to ambulance call handlers when requesting assistance in the emergency situation. This needs to be examined as a separate issue as it is not the responsibility of the SAS. We feel that some responsibility could be taken on by a carer or family member if there is prescribed emergency medication available to and suitable for the patient on the premises. If a carer or family member calls an ambulance they must be made aware that they should say to the dispatcher/paramedic that the person has epilepsy and their own epilepsy medication is available.

8 Conclusion The current shortcomings in unscheduled care for people experiencing seizures are likely to grow more acute as Scotland faces a long term increase in the prevalence of epilepsy. Current numbers of people over 65 developing epilepsy are set to increase by 50% over the next twenty years. In addition to our ageing population, medical advances which enable people to survive for longer with more complex disabilities and brain injuries, and lifestyles which increasingly involve excess alcohol consumption and recreational drug will add to this. We feel that the consultation document is a positive start. Epilepsy Scotland would warmly welcome the opportunity to work in partnership with the Scottish Ambulance Service in developing a new care pathway for seizures. We would be happy to develop a training toolbox with the SAS and assist with the expansion and delivery of bespoke training for all levels of response staff, from call handlers to paramedics. Seizures taking place in the community are often first witnessed by police staff, traffic wardens and fire crews. We propose forming a multi-disciplinary working group which would include representatives from these services as well as condition-specific stakeholders, the SAS and the Health & Safety Executive, to explore better procedures. Tel: Charity number: SC000067