This is a Department of Health, UK (National Institute for Health Research, NIHR) funded study in relation to STOMP. Stopping Over Medication of People with intellectual disability, autism or both (STOMP) is an NHS England initiative in the UK.
This project is sponsored by Central and North West London NHS Foundation Trust (CNWL), UK. The project is based at Imperial College, London, UK.
It is perceived that the two main protagonists in the prescribing process are the prescribers and the carers (family & paid). This project targets care (support) staff and currently, another proposal is being developed to target prescribers and community learning disability team (CLDT) members.
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We developed a Psychoeducational programme (PEP) for the care (support) staff.
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The PEP has two components, namely (a) web or paper-based modules, and (b) face to face training sessions.
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The paper-based material is modular in nature to cater for all levels of knowledge and is case study based.
The emphasis is to think about alternatives to medication (medicine) and assessment of behaviour, and understanding the person who has intellectual (learning) disabilities.
The ultimate aim is to reduce overmedication of people who have intellectual disabilities and provide them and their carers with a better quality of life by delivering a person-centred care.
The idea of the face to face session is to discuss real-life scenarios with a focus on practical solutions using the information available in the paper-based modules.
The second part of these sessions concentrate on carer burden/ stress and practical ways of tackling them (mindfulness training etc.).
The ultimate aim is to empower, inform and equip care (support) staff with skills to understand behaviour better, manage their psychological responses to behaviour and to negotiate the care pathway, advocating on behalf of the person they support, and taking the views of people with intellectual disabilities fully into account.
The project ran between 1st April 2019 and 31st December 2020.
Four focus groups including all stakeholders have been held.
There were two groups, and each had two meetings.
One group comprised of care (support) staff only and the second group is a mixture of home (service) managers, training leads from different provider organisations and some community learning disability team (CLDT) members.
The first focus group explored care (support) staff’s perception and attitude towards the use of medication to manage behaviours that challenge.
The subsequent focus groups explored care (support) staff and other stakeholders’ views on what should be the content and the format of the PEP.
The aim is for the SPECTROM PEP to be complementary to the existing training available to care (support) staff and not replace them.
Then there was a one-day co-design event in London involving about 30 stakeholders to fine-tune the discussions about the content and the format of the PEP. All stakeholders were involved in the process from the outset.
We established a PEP Development Group that comprised about 10-12 stakeholders who assessed all the information available including information gathered from a literature review on the subject to advice on a draft PEP.
The draft PEP was sent out to 30 stakeholders for feedback.
At the end, the newly developed PEP was field tested on 20 care staff.
The feedback from the field testing will help us to propose at a future date an RCT to compare the effects of the PEP by implementing them in a group of care (support) staff and comparing the outcome in another group who will not receive the PEP.
We also used validated measures to assess trainees' knowledge and attitude before and after the training.
The fidelity and acceptability of the training were assessed through a focus group of participants.