Former national clinical director warns of delays to the programme to stop over-prescribing medicines to people with learning disabilities or autism
NHS England takes STOMP programme out of the latest GP contract service specifications Campaigner whose son died after being given antipsychotic medication says the move is “outrageous”
People with learning disabilities or autism will continue to suffer “serious side-effects” amid further delays to a national programme aimed at stopping the overuse of medicines to control their behaviour, a former national clinical director has warned.
The “STOMP” programme – which calls on clinicians to stop over-medicating people with learning disabilities, autism or both with psychotropic medicines – was launched in 2016 with the support of the government, NHS England and four royal colleges.
The programme proposed the introduction of structured medication reviews for relevant patients. These were detailed in the ‘Investment and Evolution’ framework for GP contracts published in January last year, but the requirement has since been dropped from the latest service specifications released by NHS England in December.
NHS England says it is still committed to STOMP and is planning to pilot the programme later in 2020. Public Health England estimates that every day between 30,000 and 35,000 adults with learning disabilities are taking psychotropic medicines they do not need. Side effects suffered by patients who take medicines for too long include putting on weight, fatigue and serious problems with physical health. Dominic Slowie, who as NHS England’s national clinical director for learning disability between 2013 and 2016 was on the working group which launched the programme, told HSJ: “It’s disappointing that having had our hopes and expectations raised by the policy publication Investment and Evolution that the draft service specifications that previously contained welcome commitments to the delivery of the STOMP programme have been taken out.
“I have yet to see anything else that gives me any confidence that this programme is going to be delivered. In the meantime, people with learning disabilities and autism will continue to be prescribed medication to control their behaviour that has serious side effects.” When the programme was launched, healthcare providers were invited to support the STOMP pledge and to draw up their own action plans and self-assessments. STOMP aimed to encourage people to have regular medication reviews, make sure patients and families were involved in decisions about their medicines and to inform people about non-drug therapies.
The mother of a teenager with autism who died after being given antipsychotic medication has also criticised NHS England for the delays in implementing STOMP. Paula McGowan, whose son Oliver died in 2016 at Southmead Hospital in Bristol, now campaigns for better care for people with autism and disabilities. She told the HSJ: “A lot of hospital trusts are signing up to the pledge so they’re seen to be doing the right thing, but they are not filtering it down to their own organisation. It’s a box-ticking exercise. I think there’s got to be a greater commitment. If they really want to take it seriously this needed to be mandated among every trust.”
Mrs McGowan, who campaigns for better care for people with autism and learning disabilities, said that when she presents to audiences of up to 500 clinicians, social workers and ambulance staff typically only a handful say they have heard of STOMP. She added: “[Trusts] are signing the pledge but not embracing it, while people continue to suffer and be chemically abused. It’s outrageous STOMP has been taken out of the GP framework.”
Public Health England, in its latest guidance, said the launch of STOMP had resulted in “hardly any changes in trends” in levels of inappropriate prescribing for children and young adults, but some reduction in inappropriate prescribing for adults with learning disabilities.
An NHS England spokesman said: “The NHS remains committed to delivering STOMP through the roll-out of structured medication reviews by Primary Care Networks, but to do this we need to ensure that STOMP is delivered safely and effectively, with wider support in place for patients and their carers as medication regimes are reviewed and amended.
“We will, therefore, be testing a new model of care for STOMP this year, in advance of national roll-out through the GP contract.”