It is estimated that every day about 35,000 people with learning disabilities or autism are prescribed psychotropic medicines when they do not have a diagnosed mental health condition, often to manage behaviour which is seen as challenging. This includes medicines used to treat psychosis, depression, anxiety and sleep disorders. It also includes epilepsy medication when it is only used for its calming effect, rather than to treat epilepsy. Local analysis of GP clinical systems identified we seemed to be higher prescribers than the national audit (done in 2015). Data extracted in 2016 suggested that in Sheffield there were at least;
And
STOMPwLD is about making sure people get the right medicine and that people get all the help they need in other ways to support any challenging behaviour. It is about encouraging people to have regular medication reviews and to support health professionals to involve people in decisions about their care.
To address this locally an audit and reviews were carried out in primary and secondary care respectively and a STOMPwLD working group across health and social care (Sheffield Mental Health Transformation within the Accountable Care Partnership) was set up.
The aims of the group/ work is to;
On 14 July 2015, reports were published highlighting widespread inappropriate use of antipsychotics and other medicines used to treat mental illness in people with learning disabilities.
Following these reports, NHS England led a 'call to action' which brought together representatives of professional and patients groups to make sure changes were made to address the short comings in the report. This led to a pledge to reduce over medication and the start of the STOMP project about stopping the over use of psychotropic medicines.
Analysis of local prescribing in both primary and secondary care indicated we may be higher than the national picture and locally we wanted to prioritise this work. The STOMPwLD task and finish group was subsequently formed. The group compromises of;
The group was also able to access the views of patients to help guide and promote understanding of STOMP. The group is considering how to more formally involve patient representatives in this work.
The group meets bimonthly to ensure this remains a priority.
Patients:
The main beneficiaries of this project are patients with LD or autism who;
All these three interventions will lead to a reduction in inappropriate use of psychotropic medication and the associated adverse effects of these, improving the quality of life and life expectancy and allowing for patients to be cared for in the most appropriate care setting.
Carers/ families:
This work has made families and employed carers aware of STOMP, staff have been able to feel more able to raise concerns if they feel patients are receiving medication they would like to be reviewed. PBS training /awareness and resources have also been made available to support the care of challenging behaviour. Any reduction in prescribing will reduce adverse effects and increase quality and potentially duration of life so more and better quality time can be spent with loved ones.
Healthcare Professionals:
This work has raised awareness of STOMP and other non-behavioural support available to help any appropriate reduction in prescribing. It has led to joint working and GPs have been able to access direct advice from secondary care specialist as needed.
What were the main outcomes and / or achievements of the project?
Increased awareness around STOMPwLD among patients, carers and primary and secondary care clinicians. It has provided support and promoted joint working to reduce / stop psychotropic medication appropriately.
Primary care audit
Around 600 patients have been reviewed in primary care, as part of the primary care audit carried out in *40 Practices. As well as some interventions with individual patients, it has resulted in practices producing actions plans to do further work to improve the systems and processes and share learning of how to improve on the care and help embed STOMPwLD into future care processes.
*This was an unfunded audit and 32 practices submitted data before closing data, these were analysed in the audit review attached, a further 8 audit returns have been received since. The Medicines Management Team will be completing the audit in the remaining 40 practices. To ensure shared learning universally across the CCG.
The audit verified the findings of the pre-audit system wide clinical systems searches, there are patients being prescribed psychotropic medication without clear indication or for behavioural that challenges, when there is no evidence of non-pharmacological support being tried first.
The audit also showed that the majority of prescribing was initiated by a specialist. GPs have fed back that they feel any reduction in prescribing would need clear joint working with secondary care. This has identified an opportunity to explore putting together a business case for a joint pharmacist post within the ACP to target this patient cohort (as well as supporting review of patients with other mental health conditions).
Secondary care audit / review
The lead LD secondary care has conducted medication reviews in patients in in-patient care. A patient success story; Pt with LD and ASD reviewed, taking carbamazepine 400mg BD, Diazepam 5mg BD and zuclopenthixol 10mg BD. Indication for starting each was many years prior. Patient has had carbamazepine (27yrs after it was first initiated) and diazepam (10yrs after first initiated) stopped. The patient experienced no negative effect from stopping these medicines and the plan is to reduce zuclipenthixol in the near future.
The lead RMN/LD Nurse has also had some success stories, below are a couple of examples;
Example 1
The Community Intensive Support Service (CISS) works closely with a gentleman with long-standing delusions as a result of schizophrenia. He also has a mild learning disability, severe autism and can engage in risky behaviours. In the past he has accessed inpatient services under the MHA. CISS inputs have included regular reviews from LD/RMN nursing and psychiatry with an emphasis on supporting him with psycho-social interventions (directly provided through funded support with our support/guidance/advice/direct intervention). These are person centred and designed to keep him active, well and to ensure his confidence and self-esteem are supported. He has the opportunity to learn new skills, meet people and maintain a social life. The gentleman is himself anti-medication and insists that this approach is not for him. Clinicians working with him recognise his autonomy and do everything we can to support him to remain medication free. We offer direct support and support to his staff team. Our long-term 'therapeutic alliance' has enabled us to work in partnership, maintain his safety and enabled him to live safely in his local community without medication.
Example 2
The Community Intensive Support Service (CISS) support a lady who has a moderate learning disability and bi-polar disorder. She is appropriately prescribed anti-psychotic medication. This is titrated, as required, depending on her assessed mental state which fluctuates over time in relation to life events and stressors. She requires 24/7 direct support which is provided in her own tenancy. This lady can be challenging to support due to her determined personality and as well as her mental health diagnosis. Monitoring systems are in place to record her mental state and ensure her behavioural relapse signature is responded to in a proactive manner. It is important to differentiate between the onset of deteriorating mental health as opposed to her short term reaction to social circumstances/relationships/support dynamics. Without this nuanced approach the risk is that she would continually be prescribed high levels of anti-psychotic medication. She receives regular visits from one of our Senior Nurse Practitioners (SNP) to monitor and advise staff appropriately. Medication is reviewed on each SNP visit and minimal required dose is actioned. It is our view that in the past this lady has previously been 'over medicated' to manage behaviours. A situation that placed her health and well-being at risk.
Training events/ raising awareness
The awareness of STOMPwLD has been promoted at a number of citywide events and within key team meetings /bulletins;
