Stomp: Stopping the over-medication of people with a learning disability, autism or both.
STOMP is an important health campaign, spearheaded by NHS England and VODG. There is estimated to be between 30,000 and 35,000 people with a learning disability, autism or both prescribed psychotropic medication in the absence of a mental health condition. These, often long term, prescriptions have significant health and mortality implications for many of these people.
Social care providers are urged to sign and commit to a STOMP pledge, to work with other stakeholders to reduce the use of psychotropic medicines, with emphasis on alternative support and treatment e.g. positive behaviour, psychological therapies.
While there is a drive for providers to work hard to reduce such medication use, this is not possible in isolation – we must work closely in partnership with the person supported, their family and clinicians to safely reduce and eliminate such medicines.
A crucial stakeholder in this regard is the family. Whether it is parents and/or siblings, we must demonstrate a clear commitment, as providers, to listen purposefully and consciously to families in relation to their understanding and knowledge of these prescriptions, their thoughts and feelings.
STOMP, a family carer perspective (Challenging Behaviour Foundation, CBF, 2016) provides an excellent insight into the views, experiences and fears of family carers and concludes with a number of recommendations. Concern is expressed by family carers at the slow pace of change and with that in mind, that each additional day a person is consuming such medication, is another day of debilitating side effects.
Within CMG, on speaking to parents and siblings, there are varied views and experiences from people. What is common is that such prescriptions are typically introduced when the person is experiencing a life crisis, and the family were pretty desperate, often fearful of a hospital admission and/or serious harm resulting to the person and/or others. While families, at this point, are sometimes advised of potential side effects – it is the current crisis that takes priority and the thought of side effects is side-lined at that time. A key recommendation from the CBF is to ensure families and the person should have ‘access to local, specialist early intervention’ and for ‘families to have carers assessment, inc. a support package that minimises crisis’.
Some families I have spoken with are aware of and involved with ongoing review of psychotropic medicines for their relative. Others are concerned that they lack detailed knowledge of how the medicines act and long term potential implications. Some relatives are additionally concerned that they don’t feel involved sufficiently in the review processes.
We need therefore, to ensure we talk to and listen carefully to all involved families to be clear what their needs are and what they feel they need in terms of involvement and enhanced knowledge.
Given that STOMP is now included within the Health Charter for Social Care Providers (Public Health England, 2017), in CMG we have developed a Health Charter Strategy Group. The role of the Group is to agree and monitor CMG’s Action Plans related to the Health Charter, including STOMP commitments. Membership of the Group includes relative and user representation – to ensure families and users are involved in such decision making and monitoring of progress.
In addition, we are focused on specific psychotropic medication training for support staff with a view to extending that to families later in 2018 to offer opportunities to families to learn more about these medicines and their role in supporting with medication reviews and reductions.
It is clear that this is a significant problem for many people, and strong partnership working with and mindful listening to families is critical to successfully alter the support and treatments offered to people we support.
michael.fullerton@cmg.co.uk
