Why ‘Parity’ needs more clarity when it comes to help, support and recognition for those harmed by a

At a time when one of the greatest issues facing medicine is that of dependence on and withdrawal from prescribed drugs, in particular benzodiazepines, antidepressants and opioids, just when and how are we to establish and fund the proposed and much needed specialist support services in the UK? Symptomatic of the British lack of recognition of experts by experience and Third Sector knowledge, why have successful existing services been undervalued or forced to close? A much misunderstood issue, are Governments, Policy Makers and Medical Professionals underestimating the task ahead and failing to recognise existing expertise?

Maureen Watt, Minister for Mental Health in Scotland states, "the Scottish Government will continue to emphasise the importance of parity in physical and mental health services and that people should receive medication if they need it, “just as someone should receive medication for a physical illness.” Doesn’t that mean patients should receive help and support when they have been harmed by medication used in mental health………just as they do if they have been harmed by medication for a physical illness?

The topic of prescribed drug dependence and withdrawal in the UK has become a hot one. From landmark petitions in the Scottish and Welsh Parliaments and the establishment of an All Party Parliamentary Group at Westminster, there are calls for public enquiries, public feedback, reviews, and the introduction of a national 24-hour helpline. Relevant health departments and local authorities are being asked to establish adequately resourced specialist support services and clear guidance on tapering and withdrawal management.

For the fourth time, on April 26, 2018, the Scottish Parliament considered Petition PE1651 on Prescribed drug dependence and withdrawal, lodged by Marion Brown on behalf of Recovery and Renewal. The petition asks the Scottish Government to support the BMA’s UK-wide call for action to provide timely and appropriate support for individuals affected. The petition was set up to raise awareness of the plight of individuals in Scotland who are affected by dependence on and withdrawal from prescribed benzodiazepines and antidepressants and it received an unprecedented amount of submissions.The 125 submissions received supporting this petition are the very tip of a psychotropic iceberg. Taking into account evidence one in seven Scots now take an antidepressant, we have a potential 800,000 people who might need help now or in the future. The number of benzodiazepine dependent patients is unknown but estimates are in excess of 350,000. As Maureen Watt, Minister for Mental health calls for “stronger for longer’’, increasing numbers of patients are being parked on these drugs indefinitely.

At the petition hearing, Convener, Johann Lamont said, “The majority of submissions are from people sharing their stories about their experiences of taking certain medications and the range of symptoms they subsequently experienced. They include stories about on-going acute symptoms and the impact of those symptoms. We are not in a position to investigate or intervene in individual cases. However, it would be inappropriate not to recognise that there are in excess of a hundred individual cases behind the submissions. So, although we cannot look at individual cases, we can do something to signpost people to the places where they might find support.”

As the Petitions Committee contact the Scottish Government about whether it is liaising with Public Health England, speaking to the BMA about the question of a helpline and getting the views of GPs in Scotland, where are the people who are suffering going to find support now and in the future? Are GPs the best people to reflect on how the problem can be addressed? Whilst we question, review, and gather evidence, who actually can intervene to help individual cases? Where are the government going to actually signpost people to?

Michelle Ballantyne, MSP, added, “I find all this troubling and I found the evidence that we took at the evidence session very troubling. Perhaps we could add to that list of people to consult one of the drug and alcohol services because they see people who suffer from the consequences of prescribed-drug addiction. They also see people who use such drugs illegally from the black market, and they can talk about the impact.”

Those of us who understand prescribed drug dependence accept there are enormous differences between the needs of illicit drug users and those who have become dependent on prescribed medication. Undoubtedly, there is a need for a collaborative approach to prescribed drug management and withdrawal but are drug and alcohol Services best placed to provide the services? With benzodiazepines and antidepressants, the dependence is chemical and not psychological. There is a need for the taper rate to be based on how people feel, a method I have long supported. Individual experiences of tapering and withdrawal very widely.

Scotland could learn much from Mind in Camden’s REST Service, (Recovery Experience Sleeping Tablets and Tranquilizers). REST is a relatively small but hugely significant organisation in the field of prescribed drug dependence and withdrawal. Rest has worked in Camden and Islington for over 30 years providing individualised and tailored support to over 1000 people. A rare, specialist service, they have helped patients safely taper dosage and achieve successful long term withdrawal from benzodiazepines or Z drugs. REST has also provided short term or one off advice to a further estimated 2,000 people. They work intensively with people who have been on the drugs for a long period, often who have had previous failed attempts to withdraw, most often due to bad advice from other services.

REST works because the location of the service is in a non-clinical organisation. People feel that those supporting them are unconditionally ‘on their side’. The fact the service is delivered by non-clinicians is key to its success. Without question, REST provides best practice for specialist support services for prescribed drug dependence. It has three simple outcomes - stabilising usage, slowly and safely tapering dosage and complete withdrawal.

REST talk a hell of a lot of sense. Mind CEO Brian Dawn said, “There are few organisations in the UK or anywhere else that have this quantity and quality of systemic experience of listening to, supporting and building services around people going through what is far from a ‘one size fits all’ process.”

However, from March 2019, Camden Clinical Commissioning Group have decided to provide REST services through existing substance misuse services. In the past parliamentary processes to lobby for specific support for people who have become dependent on benzodiazepines due to prescriptions, found the ‘case against’ cited that specific services provided by drug and alcohol services have not attracted sufficient takers to be economically viable or effective. This was used as evidence that such services are not needed. It is now more acknowledged that the resistance of prescribed users to accessing these services is often engendered by already isolated and disillusioned people being required to attend the same clinics as recreational or illicit drug users. Camden CCG believe they will be able to address this through consulting with existing REST service users, as to how this huge cultural challenge can be addressed.

GPs continue to dismiss and minimise prescribed drug dependence. They misunderstand or treat it in the same way as addiction, often blaming people who are simply the victims of bad prescribing and they often send patients to existing drug and alcohol services who do not understand prescribed drug dependence. There has been significant opposition against reproviding REST in the way Camden CCG are moving forward with. There is a concern that the culture and expertise of REST will be lost, where the crucial subtleties developed over 30 years of practice will be lost, as high level good intentions do not translate on the ground, leaving service users feeling alienated in services unsuitable for them. On the other hand if Camden CCG are able to truly take on board the level of change needed to provide this kind of service within their existing provision, then could we have what the BMA and Governments are asking for, “adequately resourced specialist support services for prescribed drug dependence”?

Patients are suffering the iatrogenic effects of these drugs often leading to disability claims, further health care costs, deaths and additional psychiatric diagnoses. The cost to us socially, individually and economically is unquantifiable. One thing is clear, the more drugs we prescribe and the longer they are prescribed for, the more it will cost to help patients. As the scale of the problem of prescribed drug dependence and lack of specialist support services escalate, we owe it to everyone in the UK inadvertently suffering dependence on prescribed medication now and in the future to learn from REST and experts by experience to build best practice for those suffering.

Patients have two options; remain on the drugs or seek help. At the moment there is “no informed support whatsoever for people in Scotland”. Isn’t it time mental health parity meant helping those who have been harmed by medicine…as would happen with physical Health? You can’t have it both ways Maureen Watt!

Beverley Thorpe

bthorpe@medconsulting.co.uk