MARTHA’S LAW, SECOND OPINION AND RECKLESS PRESCRIBING WITHOUT LOOKING INTO PATHOLOGICAL CAUSES
Yesterday i received a distressing text message from Elizabeth to say she was injected again and I found out that this injection was Procyclydine, a drug being prescribed “off label” under Lincolnshire Partnership Trust who have not once taken into consideration the fact that she is a poor/non metaboliser or bothered to look into pathological causes for non-metabolisation. None of the many drugs prescribed to Elizabeth have ever worked so why is this? So many doctors and even the CQC’s very own SOADs have neglected to look into reasons why and have sanctioned the raising of drugs to enormously high levels and on top recommend frequent transquilisations and as a parent I am quite frankly appalled by this reckless prescribing and concerned for my daughter’s life. This could lead to further injury to my daughter who I suspect is already injured because so many doctors have prescribed at high levels, ignored the P450 liver enzyume tests and gone down the route of polypharmacy even prescribing contra indicated drugs that are a harmful combination as is procyclidine and clopixol. I have had to turn to leading experts in the field of pharmacology who have great expertise as I am just a mother but every parent should have the right to be listened to and granted second completely independent opinions and so should vulnerable patients who complain of terrible side effects instead of being dismissed like rubbish. I could not sleep tonight as so concerned for my daughter’s wellbeing currently held on a never-ending section under Castle Ward, Lincolnshire County Hospital (LPFT) where they have introduced Parkinsons Drug Procyclydine on top of an already high dosage of clopixol and I bet they not told her anything about these drugs under the Informed Consent Act and treated her like a vegetable as they have carried out countless capacity assessments that are completely flawed which I have no choice but to challenge as when someone is deemed by a team of so many under an MDT to have no capacity this means they can control everything without any regard to the vulnerable person who is claiming she is being abused and I have been cut out of everything in the most dishonest manner – how many other parents who show concern have been treated in such a manner under MH.
Last night I phoned Castle Ward and spoke to a nurse called Elizabeth. I was told that if I had any concerns I needed to contact Dr Khochar, the RC. I then told her that I had written a letter to Dr Khochar and to the ward (hand delivered) during my visit last Friday about by my grave concerns on the introduction of Procyclidine on top of an already high dosage of Clopixol depot of 500mg per fortnight. I am quite frankly worried for her life right now and I would also urge other parents to look into prescribing of their relatives and find out the facts because it would appear under Lincolnshire Partnership Trust (just one example of many) the solution is to raise the drugs to a poor (or could it be completely non metaboliser) proven by scientific P450 liver enzyme tests that have now been adopted by the NHS and should be available to everyone so other parents need to ask why haven’t their sons and daughters had such tests done that recommend the lowest dosage quite rightly so. The problem is that the NHS are ignoring the scientific test results done on Elizabeth and I do not like that one bit especially since that could lead to serious injury for which I want there to be full accountability. I cannot believe their arrogance – I have a meeting coming up with those at the top of the Trust on 2nd October. I have had a short email trying to reassure me they are doing everything possible for good but I am far from reassured as I prefer to turn to leading experts in pharmacology.
I was asked last night what I knew about the drug Procyclidine and so I told Elizabeth (the nurse concerned) this was a drug for Parkinsons – could this be the real reason why the drug is being prescribed? – could this be the Central nervous system condition mentioned on the discharge note from former area Enfield? There is a wall of silence every time I have asked this question. There seems to be some sort of cover- up as it is twice mentioned “abnormal findings on scan”. This is being played down and so is the fact that since the Clopixol has been raised to 500mg a fortnight Elizabeth has been complaining about having difficulty in walking and asking me to bring in walking aids because she is struggling. I am fed up with the feeble playing down by members of staff of the fact Elizabeth has told me more than once she feels unstable on her feet and feels she is going to fall. This was not a matter of concern prior to the dosage of clopixol being raised to 500mg a fortnight. I am most certainly not reassured by anything I am told by LPFT to play matters down. If it is not correct that the Procyclidine is being prescribed for Parkinsons then why is it being prescribed? could it be that the Clopixol has been raised to high level and causing terrible side effects affecting her ability to walk etc. What is this …….torture springs to mind! Elizabeth, the nurse on duty tonight, then commented she could not speak to me or give me any information as I had asked for the amount of the Procyclidine prescribed. She said that she could not speak any more to me – that I could be anyone. The fact is when you contact a bank you have to verify who you are but at least you get dealt with and listened to – this does not apply to any concerned parent contacting a ward under the NHS MH. If there was openness and transparency there would have been no need for my call last night out of concern or for me to be writing this blog. It is all about proper communication which seems to be non-existent under LPFT apart from 2 carers leads. It is a weekend so I was not expecting a solution immediately upon my call but my call is out of sheer concern for my daughter’s wellbeing and at first upon moving I sat back and did nothing as I did not want to start off on the wrong foot but after 2 years and no improvement I now want some answers and there is no way you as a parent /carer should be dismissed. She was not even sectioned before so Elizabeth has been “stolen” – taken away and incarcerated forever by way of stealth. It is shameful the way this has been achieved and not about care at all. If the right care and environment were provided then I along with many other carers would not have a complaint and when you complain this is when you see the ugly side of the NHS and staff they employ who try to tarnish your character and make you out to be coercive, domineering, aggressive, intimidating and even mentally ill. It is cowardly to do this behind your back in file papers and reports for court purposes and this is why the court system needs to be open and transparent and as this is public funding despite the fact a vulnerable person is in the centre of this, if there is no transparency there is no justice and human rights are breached/violated. So Elizabeth and I have made the decision to go public as she is so distressed at the way she is being treated right now and SHE HAS FULL CAPACITY. This will be challenged in an open and honest court for everyone to see.
I had requested in my letter to Dr Khochar RC of Castle Ward Lincoln County Hospital to hear his reasons for the raised high dosage of clopixol per fortnight plus now procyclidine being injected on top and then on top of this God knows how many rapid tranquilisations. I have written to Dr Khochar about this and handed in a letter on Friday last. The current treatment sounds to me like a chemical straightjacket and not care. The injections hurt her and the treatment does not even work and is affecting her physical health. Not once has any psychological input been given under LPFT with the excuse “it is not the right time”. Well I think I think it most certainly is the right time to look into this reckless prescribing without any pathological investigation into the scientific tests already done indicating “poor or could it be completely non metabolising” inability on Elizabeth’s part. The P450 liver enzyme tests are now available to everyone on the NHS so why aren’t patients on MH wards being given these tests BEFORE prescribing if the drugs are not working instead of raising them to enormous levels which can cause serious injury.
There has also been threat of sending her to London for the purpose of Clozapine – another useless drug that gave serious side effects and in the injection form is NOT EVEN APPROVED under the UK so why on earth are some areas prescribing it? Why is this being allowed under the UK???
HERE ARE THE PATHOLOGICAL TEST DETAILS I AM REQUESTING:
“it is very important that Elizabeth is tested for Multi drug resistance associated protein 1 (MRP1). If these transport proteins are not correctly expressed she could have serious adverse effects caused by an inability to efflux drug substrates from brain tissue and this can lead to neurotoxicity, another organic brain disorder. This is the transport protein for clopixol P-GTLY;COPROTEIN (P-gp).
If the above tests are carried out by second opinion doctors from NHS England or GMC I will be reassured. I cannot however trust the SOADs of the CQC having read the files and seen how these doctors can allow T3 prescribing to someone at enormous levels who is a POOR OR IS IT NON METABOLISER? Even I as just a mother would know this is wrong which is why I have turned to leading experts (pharmacologists) as there does not seem to be any such expertise on the wards or anyone who could care less about pathological causes and this needs to be changed to avoid serious injury to those vulnerable people and to reassure their caring parents and families properly instead of making feeble excuses.
EVERYONE SHOULD BE ASKING FOR MARTHA’S RULE. I have yet to find out if Lincolnshire is an area where this is adopted and if not my question would be Why not! and I will be contacting NHS England about this. MARTHA’S RULE MUST BE MANDATORY TO ALL TRUSTS!
Martha’s Rule: giving hospital patients and their families direct access to a second opinion
The parents of a teenage girl who died needlessly in hospital are calling for NHS patients to be given the right to an urgent second opinion, if they feel their concerns are not being taken seriously by medical staff.
Martha Mills died after multiple failures in the treatment of her deteriorating condition from sepsis following internal injuries in a cycling accident. A coroner’s inquest found that she could have survived if she had received better care, including timely transfer to the paediatric intensive care unit. During her time at King’s College Hospital, her parents repeatedly expressed their concerns about her condition, such as bleeding and a rash, and raised the possibility of septic shock, but their concerns were dismissed as being overly anxious.
The hospital has admitted that there were mistakes in Martha’s care. Investigators criticised the failure to move the child to the paediatric intensive care unit (ICU) sooner as indefensible, given her symptoms which included persistent fever, bleeding from her tubes, extremely low blood pressure and rash. If she had been moved to the ICU, special steps would have been taken to control the infection and she would have received specialist observation and treatment.
Martha’s mother recalls expressing her anxiety and trying to find ways to communicate to the hospital staff that something was not right as she became increasingly worried about her daughter’s condition. She found out later that her daughter’s risk of sepsis had been flagged by the nurses and her severe sepsis was known to her doctors who were perplexed by her condition but did not seek help from sepsis specialists within the same hospital. No sense of emergency or gravity was communicated to Martha’s mother until, after a seizure, Martha was finally admitted to intensive care at high risk of death.
Despite having done all that she could, Martha’s mother has spoken out about her feelings of regret for having trusted the clinicians against her own instincts. She wishes that she had felt able, “with no fear of being the target of ill-temper or condescension”, to ask for a second opinion from outside her daughter’s healthcare team when she became concerned about her deterioration. Instead, she was left with no choice but to accept what she was being told.
How would Martha’s Rule work?
Systems which allow hospital patients and their families to call directly for a second opinion (escalation) from a separate team of clinicians if they feel they are not being heard or receiving a response have been proven successful in hospitals in areas of the UK and abroad.
A system called Condition H(elp), which was developed in Pittsburgh and now operates in various hospitals across the USA, allows patients and their families to summon directly the Rapid Response Team (RRT), using a 911 call within the hospital. Two years after the system was launched the Children’s Hospital of Pittsburgh found that it had responded to 42 calls from patients and parents, all arising from communication breakdowns between the patient or parent and the patient’s doctor or nurse. The system had not been abused by patients and had not led to any significant increase in workload, but had consistently led to better patient outcomes, including at one hospital a significant reduction in cardiac arrests and associated deaths, and increased numbers of patient transfers to higher levels of care, such as intensive care. In addition, it had led to wider benefits as the trends in calls were understood and addressed.
In Australia, an escalation process known as ‘Ryan’s Rule’ arose from parents’ concerns being dismissed leading to their son’s death from undiagnosed infection and toxic shock syndrome. Ryan’s Rule allows families to call a dedicated telephone number and ask for a ‘Ryan’s Rule Review’ by a Ryan’s Rule nurse.
In 2009, the Royal Berkshire Hospital pioneered a patient escalation scheme called Call 4 Concern or C4C. The scheme allows patients and their families to call or bleep the hospital’s in-house Critical Care Outreach Team at any time of day if they are concerned about a change in the patient’s condition which they feel their care team is not recognising. The scheme is publicised by posters and leaflets around the hospital and on every bedside locker. Reviews show that over a seven-year period, 534 calls to C4C led to significant interventions in a fifth (114) of cases, including further specialist review and admission to higher levels of care, with additional safety benefits resulting from the other referrals. They also found that 11 calls were made by staff on behalf of a patient’s relative, demonstrating how C4C had become an established service and was accepted by clinical staff. The C4C scheme has subsequently been adopted by various other NHS hospitals.
These successes have led Martha’s family (via a Demos report) to call for NHS England to introduce into more hospitals ‘Martha’s Rule’, a standardised, system-wide, family or staff-activated rapid response team call out, which would empower patients to voice their concerns and encourage clinicians to listen to them more. If properly implemented, it would enable families or carers to call easily for a rapid review or second opinion from an independent ICU or HDU (high dependency unit) doctor within the same hospital in the event of a suspected deterioration or serious concern on the part of a patient on a hospital ward.
Improving patients’ access whilst maintaining doctors’ responsibility
Commenting on the circumstances of Martha’s death, an NHS spokesperson is reported to have reiterated that patients and families can seek a second opinion if they have concerns about their care and that doctors’ professional guidance makes clear that it is essential that any patient’s wishes for a second opinion are respected. However, countless inquiries and reviews have highlighted the NHS’s inability to address the entrenched cultural problems which so often result in preventable harm to patients. Escalation of the patient’s or parents’ concerns is often made impossible in practical terms by hierarchical professional structures, teamwork and communication failures, confirmation bias, and failure to risk assess, review, recognise and then escalate deterioration in the patient’s condition.
We see these problems reflected in fatal and severe injury claims following delayed diagnosis, escalation, senior review and treatment of life-threatening conditions across all specialities, but particularly in time critical treatment of spinal injury/CES, birth injury, meningitis and sepsis.
In too many cases, patients and families’ justifiable concerns, questions or challenges are dismissed by the clinicians who are responsible for their loved ones’ care, leaving them shamed into doubting their own instincts or powerless to prevent an evolving catastrophe. Parents want to put their trust in their medical professionals in extreme and life-threatening situations involving their child but often have an intuitive sense of their child’s deterioration which a doctor with overlapping responsibilities for multiple patients may not readily see. Feeling powerlessness to challenge decisions or delays which result in serious harm or death to a child leaves parents with feelings of guilt and self-blame, often resulting in psychological injury, when the burden of responsibility was not theirs to carry.
The patient’s family can provide vitally important insight to the clinical team about the patient’s medical history, but nothing should take the place of adequate medical examinations, investigations to rule out differential diagnoses, risk assessments and treatment plans, all of which should be kept under review and be flexible enough to change or be escalated in response to changes in the patient’s condition.
Alongside the clinicians’ responsibilities, having a well-publicised, standardised means to call independently for a second opinion would provide parents and partners with a way to raise serious concerns and have them considered, without confrontation, and whilst bypassing many of the hierarchical or cultural barriers to escalation or review. But it is also vitally important that escalation is not perceived primarily as the patient, parent or family’s responsibility and that the duty to review, continually risk assess, escalate and correctly manage the patient’s deteriorating condition remains with the healthcare team. The aim must be to facilitate patients’ families’ access to a second opinion, rather than shift the responsibility for taking action from the doctor to the family or patient. Correct and timely care is the doctor’s responsibility and cannot be left, particularly in times of staffing and workforce shortages, to the patient’s family.
What happens next?
The Parliamentary and Health Service Ombudsman (PHSO) and patient safety charities, such as Healthwatch, have expressed their support for the proposed introduction of Martha’s Rule in hospitals in England. The Secretary of State for Health and Social Care, Steve Barclay, has indicated that the government intends to consider the proposals.
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BENZODIAZEPINES
Is there any possibility that Lincolnshire County Council have similar involvement, since Elizabeth has had frequent rapid tranquilisations and even though she is on a ward it would seem that non-medically trained “professionals” get involved legally when it comes to treatment. We have experienced gaslighting and bullying for being outspoken and then you are portrayed wrongly for being assertive out of valid concerns as someone who is awkward, unsuitable and risk to a vulnerable patient when that parent has turned to leading experts for advice. They try to label/ put blame upon you as a parent as being way harmful or reckless even abusive when my daughter is complaining to me she is being abused under the MH and she is where she is and on a never- ending section achieved through dishonesty thanks to LINCOLNSHIRE COUNTY COUNCIL whose non- trained medical “professionals” even comment on “treatment”.
See below an interesting article and I am pleased to read that this has been looked into but would suggest that EVERY council is investigated in our case LINCOLNSHIRE COUNTY COUNCIL:
“A review of prescriptions given to hundreds of people with drug and alcohol dependencies across England has been triggered after an investigation revealed that a charity breached national guidelines for prescribing diazepam.
The Local Government and Social Care Ombudsman found that Change Grow Live (CGL), on behalf of Cambridgeshire County Council, had been prescribing benzodiazepines to people long-term, against national guidance.
CGL is a national charity that provides drug and alcohol services for 50 other councils.
The NHS recommends that diazepam should not be used for longer than 4 weeks. People should have their prescriptions reviewed regularly, and those reviews should consider the benefits and risks of continuing with the current dose, reducing or stopping it, with a management plan put in place after each review.
Prescriptions Issued Contrary to Agreed Policy
However, in its investigation, the Local Government and Social Care Ombudsman found that CGL had been prescribing benzodiazepines to people long-term, “against national guidance and not in line with its own prescribing policy”.
During the course of an investigation relating to a client of CGL in Cambridgeshire, the Ombudsman discovered there were others receiving prescriptions for benzodiazepines long-term who were not part of any complaints procedure.
For the latest investigation, a CGL clinician audited the records of nine clients in its Cambridgeshire service who were prescribed long-term benzodiazepines. The audit uncovered that although six of the cases had a clear rationale for their long-term prescription, three cases did not.
The Ombudsman asked CGL to provide an anonymised breakdown of the number of clients on long-term benzodiazepines for each council area where it ran services. This identified that 343 clients were on long-term benzodiazepine prescriptions in the services commissioned by 50 other councils in England. Subsequently, CGL’s medical director commenced a national clinical audit focussing on benzodiazepine prescribing across the organisation.
Patients to Receive Comprehensive Reviews
The ombudsman found CGL was either not reviewing people’s prescriptions regularly enough or not keeping proper records of reviews, and concluded that there was “fault” by CGL which acted for the Council. This had caused “avoidable uncertainty” about the management of clients prescribed long-term benzodiazepines, the report emphasised.
The ombudsman recommended that CGL and the Council provided a report of the national clinical audit currently being undertaken by CGL. The Council was also required to ensure CGL improved record keeping, updated its policy to include recent guidance from NHS England, and completed yearly audits of Cambridgeshire CGL clients who are on long-term prescriptions of benzodiazepines.
The Council must consider the report and confirm within 3 months the action it has taken or proposes to take, ordered the Ombudsman.
Nigel Ellis, Local Government and Social Care Ombudsman chief executive, said he was “pleased that patients in these vulnerable groups will now have their cases reviewed more regularly and comprehensively”.
Mr Ellis stressed that both CGL and the council had “co-operated fully” with the investigation, and had provided “ready acceptance” of the recommendations.”
Medscape News UK has asked CGL to comment.
Psychiatric Abuse UK 