Recovery and Renewal is an independent patient self-help group which was founded in Scotland in 2013 with the aim of supporting people recovering from the effects of drugs, such as Benzodiazepines and Antidepressants, ‘taken as prescribed’.
Initially we held local meetings and invited people to join taster sessions for a variety of alternative non-medical therapies with a view to supporting recovery. We found that many people were suffering very severe and complex difficulties with their medicines, which were not recognised as such by their doctors.
We then began to try to find sources of appropriate support and help for patients experiencing these issues with dependence on and withdrawal from these medicines – and found that there were no existing dedicated support services in Scotland. This led on to us becoming involved with the BMA Board of Science project ‘Prescribed Drugs Associated With Dependence and Withdrawal’.
This petition has been set up on behalf of Recovery and Renewal to raise awareness of the plight of individuals in Scotland who are affected by dependence on and withdrawal from prescribed benzodiazepines and antidepressants – and specifically to ask the Scottish Government to support the BMA’s UK-wide call for action to provide timely and appropriate support for individuals affected.
Several participants of the group are ‘experts by experience’ who have many years of personal experience of taking benzodiazepines and/or antidepressants, diligently as prescribed on doctor’s medical advice, and then experienced dependence and immensely difficult withdrawal. These medicines were taken in good faith, trusting the doctors’ professional expertise, and then consequently found to have caused unexpected serious harm.
Benzodiazepines
The damaging effects of benzodiazepines have been extensively documented in the medical literature, most notably by Prof Malcolm Lader: (Lader, M. (2011), Benzodiazepines revisited—will we ever learn? Addiction, 106: 2086–2109. doi:10.1111/j.1360-0443.2011.03563) and Prof Heather Ashton in the UK. The Ashton manual is the most commonly used resource for patients attempting to withdraw from these drugs: http://www.benzo.org.uk/manual.
Benzodiazepine withdrawal can be a horrendous ordeal lasting for months or years. It has been said that withdrawal is worse than coming off heroin and, for a minority of patients, it is torture of mind and body. Yet there is no dedicated support service for patients in withdrawal. Patients are forced to seek support online for support groups, such as Benzo Buddies. Whilst this is an invaluable resource, it is not sufficient for many patients. There is growing evidence that benzodiazepines increase the risk of many diseases including Alzheimer’s http://www.bmj.com/content/349/bmj.g5205. It is therefore essential that as many patients as possible are given appropriate support to withdraw from these drugs.
Antidepressants
There is now significant evidence that antidepressants have limited benefit for the majority of patients who consume them http://cepuk.org/unrecognised-facts/no-benefit-over-placebo/. There is also strong evidence that they increase risks of suicide and violence in some people – and this factor tends to be discounted http://www.bmj.com/company/wp-content/uploads/2014/07/antidepressants.pdf.
Despite this, the prescribing rates rise exponentially year-on-year in Scotland. In 2009/10, 633,791 patients were dispensed at least one antidepressant drug, rising to 846,979 in 2015/16. This is alarming. Approximately 20% of adults are being prescribed an antidepressant. So, whilst not only of limited benefit, they are now associated with considerable harm including post-SSRI sexual dysfunction https://rxisk.org/post-ssri-sexual-dysfunction-pssd/ and withdrawal effects sometimes being even worse than for benzodiazepines and heroin. They cause long-term negative effects to the brain and central nervous system particularly among long-term users: http://cepuk.org/unrecognised-facts/long-lasting-negative-effects/. The lessons of the benzodiazepine scandal have clearly not been learned by the Scottish Government.
Unexplained symptoms
Because the side effects, tolerance effects and withdrawal effects of these medicines are not medically recognised for what they are, when patients develop these related effects/symptoms they are often prescribed other medicines and then polypharmacy confounds and complicates the problems further.
Recovery and Renewal has found that GPs are the main prescribers and they, and specialists such as neurologists, gastroenterologists, cardiologists, psychiatrists and so on to whom patients are referred, are acting defensively - apparently constrained by unresponsive and blinkered healthcare systems in which they operate. What is happening currently is the antithesis of responsive constructive systemic feedback and ‘learning from error/evidence’ of actual patient experience.
Patients are repeatedly told to go back to their GPs and local health boards if they experience problems and are dissatisfied. Individual personal experiences show how far this has got them: if patients cannot get any acknowledgement from their GP that (for example) prescribed benzodiazepine and/or antidepressant dependence or withdrawal is the cause of their wide-ranging, debilitating and confusing symptoms, how can affected individuals hope to get any appropriate advice, care, tests or necessary treatment? It has become abundantly clear that currently patients are consequently suffering very serious harm, disability or even death/suicide.
Affected patients are finding themselves with apparently vague diagnoses (perhaps only discovered if they ask for their medical notes) such as ‘medically unexplained symptoms’ or ‘functional/somatic system disorders’. These are essentially psychiatric diagnoses attributing various debilitating and disabling symptoms to patients’ own anxiety, beliefs, etc.: http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx.
This has the effect of discounting, disempowering and demoralising these unfortunately affected patients still further. If it cannot be acknowledged that patients can have sustained functional nervous system dysfunction and damage as a consequence of taking medicines ‘as prescribed’ (and sometimes over many years), systemic medical learning and improvement is stifled and patients continue to be further harmed. Meanwhile the initial prescribing risks remain severely underestimated and misleading prescribing guidelines and ‘best practice’ advice persists unchanged.
Patients who need to safely withdraw, are withdrawing - or indeed have withdrawn and are still suffering after complete withdrawal - from these prescribed benzodiazepines and antidepressants all need appropriate help (including appropriate professional medical help) where the issues of the drug effects are honestly recognised and taken into full consideration. Currently the harmful effects of these prescribed drugs are being routinely evaded, and affected patients can be left feeling deeply betrayed. The principle of duty of candour is directly relevant here.
Call for Action
Shona Robison MSP, Cabinet Secretary for Health and Sport, is responsible for the health of the public. This is a public health issue as acknowledged by the BMA. The current policy on prescribed drugs associated with dependence and withdrawal is completely inadequate.
The BMA has called for action on this issue (https://www.bma.org.uk/collective-voice/policy-and-research/public-and-population-health/prescribed-drugs-dependence-and-withdrawal) and the APPG-PDD has now (28 March 2017) published a proposal for a national helpline – details below
http://cepuk.org/2017/03/28/mps-peers-present-case-national-prescribed-drug-helpline-public-health-england/ and http://prescribeddrug.org/appg-for-prescribed-drug-dependence-publishes-proposal-for-national-helpline/
We call for the Scottish Government to raise awareness of this issue and fully support the BMA’s recommendations and the work of the APPG-PDD for the people of Scotland.