Recently, I was unfortunate enough to suffer a period of poor mental health. At my wit’s end, I went to my local Crisis House in North Camden.
If you’ve never been in this position, I can tell you I didn’t take the decision lightly. Crisis houses are not fun places to be, and I was scared about being away from my home, with my black fluffy cat and beautiful garden which both give me a lot of comfort.
But I was at the end of my tether.
Having made the decision to go, I was assessed by the crisis team and assessed as in need of a bed, but it was refused to me. Why? Because I take medication prescribed by a non-NHS doctor. That was the sole reason.
Having told me this, they were happy to watch a suicidal woman, who had recently made her will and worked out how to kill herself, walk away into the sunset.
I don’t believe what happened to me was right, fair or lawful. Here’s my complaint letter (some details redacted to preserve anonymity).
To whom it may concern
- Failure to Perform Assessment in Line with C&I Values
- Failure to Risk Assess in Line with C&I Policy
- Refusal of Access to NHS Services
I write regarding my experience yesterday, 8 April 2016, applying for a bed in North Camden Crisis House. I have several concerns about the experience that I will detail below.
I arrived at the crisis house following a period of several weeks of self harm (cutting), constant suicidal ideation, and making plans to hang myself by buying a rope and working out how to carry out this plan. On 28 March I had presented at A&E seeking an admission and was assessed by [doctor’s name], who was prepared to admit me to an acute inpatient ward or crisis house. However, after four hours in A&E I felt unable to sit any longer due to chronic pain and self-discharged, hoping I could use self-management strategies to recover at home.
Unfortunately my illness did not improve in the following days, culminating in my self-referral to the Crisis House. I do not feel my experience with the team was a positive one and I should like you to investigate the following issues.
I do not feel my assessment was carried out in the spirit of C&I “Being Open and Duty of Candour” policy (2015). This policy states:
- [Service users] will receive a warm welcome throughout the journey to recovery;
- They, their dignity and their privacy will always be respected;
- Their care will be founded on compassion and kindness;
- They will receive high quality, safe care from a highly trained team of professionals; · We work together as a team to ensure they feel involved and offer solutions and choices – ‘no decision about you, without you’;
- We are positive so they can feel hopeful and begin their journey of recovery knowing we will do our very best. (p.3).
I do not feel I was given a warm welcome during my assessment. The assessing questions were asked in a mechanical way, using jargon. For instance “what would you consider to be your stabilising factor?” – meaning, in layperson’s terms “what support systems/strategies do you have in place to stop you hurting yourself?”.
I appreciate that professionals have to ask a range of standard questions in their assessment but there are ways of doing this to make it feel like a personal, caring interview rather than being asked deeply upsetting questions such as “do you have any thoughts of suicide now” blankly and as if by rote.
I also felt that the initial assessor was judgemental regarding an antidepressant I take which is not on Camden’s formulary. When I told her the name of the drug she said “that’s expensive, isn’t it?, although I didn’t think this comment had any relevance to my informing her of my list of prescribed meds. She went on to say “we don’t prescribe that”, leading me to have to inform her of NICE guidelines on prescription of escitalopram in cases where the patient has had no response to citalopram, and to explain that the decision to give me the more expensive drug had been taken by my psychiatrist/psychologist at the Dartmouth Park Unit, who have overall responsibility for my care. She then asked how long ago had I been on citalopram, again a question which I don’t feel was relevant under the circumstances. I don’t expect to be given an unofficial medication review by a nurse assessing me for a crisis bed when I already have an established care coordinator and psychiatrist in place.
I gave the assessing nurse a full account of all the prescription medication I take, following which she asked me to go home and wait until she had spoken to the team.
I had already been told on the phone that if I passed the assessment I could be immediately admitted, so had brought an overnight suitcase with me. I explained that it would be difficult (not to mention expensive in taxis) for me to go home needlessly as I had been told I could wait at the unit. One of the most severe and exacerbating symptoms of my mental illness is that I struggle to leave the house alone, and so I did not feel that dismissively being told to “go home and wait for our call” was very kind, compassionate or considerate of my personal mental health needs. In fact I felt as if I was being treated as an object rather than a person in crisis with acute mental health needs.
I waited in reception and was shortly seen by a lady who introduced herself as the manager of my assessor. I apologise for the lack of names, but I was in a distressed state – I hope the names of the assessing staff are apparent from your notes.
This nurse asked about one of the prescription medicines I take – liraglutide – which I buy from an online clinic. The clinic is CQC registered and the medication is prescribed by a doctor. I buy it privately as I find it helps immensely with both my bulimia and alcohol consumption, both of which have been a problem for me during past periods of mental ill health.
I found the manner in which the nurse questioned me about this drug to be both patronising and offensive.
Having attended the North Camden Acute Day Unit in the past I had made them aware of my use of this drug and had taken heed of the fact that this was a drug they would not advise me to continue taking. I had been frank that my taking this drug was a calculated risk, and though there were possible side effects that could be detrimental to my mental health, I explained that I had felt much better since starting the drug. The fact that it is used off-licence (its primary use is for treating type 2 diabetes) is not of concern to me, as the majority of the drugs I have taken during my long treatment for mental illness – especially bipolar disorder – are used off-licence. Similarly, I think without exception, all my psychiatric medications have carried warning of side effects of mood swings, urge to self-harm, and suicidal thoughts.
My point is that although I understand my medical professionals warning me against this drug as it is largely an unknown quantity to them (I have never been provided with any explanatory evidence as to risk of harm, simply been told “we would not advise it”), I have taken a calculated risk to continue this drug as I find it helpful with some of my psychiatric symptoms. I should also point out that at 57kg and 160cms the NHS BMI calculator places me in the middle – upper of the “healthy weight” range with a BMI of 22.2 – so I am not displaying any symptoms of being underweight.
To return to the manner of the senior nurse, it is perhaps most illustrative if I recount the conversation to the best of my memory.
N: So you purchased this drug online? [little laugh] We wouldn’t allow it here.
J: It’s prescribed by a doctor
N: Where from?
J: An online clinic. The doctor reviews your information and issues the prescription.
N: But they wouldn’t have seen you. We wouldn’t allow that here. We don’t even allow over the counter drugs like paracetamol here.
J: But if someone needed to take paracetamol, it would be administered? I’m quite happy for you to hold the drug – it needs to be kept in a fridge anyway – and administer it.
N: We wouldn’t allow that in an inpatient setting
- Note: It’s my understanding that a crisis house is not an inpatient setting
J: Where is it in NHS policy that drugs obtained on private prescription are not allowed?
N: It’s a local policy…we do it case by case. Your boyfriend could take the drug home.
- Note – I have no idea of the risk of stopping this medication suddenly, but I do know that is generally not advised
J: The staff at the [Acute Day Unit] know I take this drug and have done for some months.
At this point the nurse went to consult with [doctor’s name], leaving me once more in the waiting room. By this point I was quite distraught.
As [doctor’s name] was not available, the nurse spoke to one of the doctors on duty in the ADU who confirmed that they were aware I take liraglutide but don’t advise it. On this basis, the nurse tells me that they will not offer me the vacant bed.
I have several issues with this stage of the proceedings. Firstly, I don’t feel it is in the spirit of C&I values: ‘no decision about you, without you’ – this decision was taken without regard for any rationale I may have for taking this medication. Rather than taking a legally prescribed drug from a licenced clinic I was made to feel that I was taking an illicit substance purchased from a street corner. I was not given any medical/clinical information as to why the drug was “not advised”.
A more serious concern I have about this decision was that I do not feel the risk assessment was taken in line with C&I policy, or that the outcome was safe.
My assessment at the Crisis House began with an evaluation of my current mental state. The Clinical Risk Assessment and Management Policy Section 8 (p.16) states:
It is important that teams give careful consideration to managing the risk behaviours identified during the assessment. The risk management plan (which should be fully reflected in the care plan) should include a summary of all risks identified, formulations of situations in which identified risks may occur, and actions to be taken by practitioners and the service user in response to a crisis. The risk management plan should include:
- Management of the risk of suicide/self-harm
- Management of the risk of harm to other people
- Management of the risk of severe neglect
- Management of the risk of harm from others, historical and current.
Following my initial assessment it was clear that I had suicidal thoughts and plans, as well as plans to self-harm, and these factors presented a significant risk to my wellbeing.
However, I was denied access to a crisis bed on the basis on an unquantified risk, namely a privately prescribed drug. I feel this is counter to Section 9 (pp.17-18) of the same policy that states a commitment to positive risk management (emphasis added).
Positive risk management as part of a carefully constructed plan is a required competence for all mental health practitioners. Positive risk management includes:
- working with the service user to identify what is likely to work;
- paying attention to the views of carers and others around the service user when deciding a plan of action;
- weighing up the potential benefits and harms of choosing one action over another;
- being willing to take a decision that involves an element of risk because the potential positive benefits outweigh the risk;
- being clear to all involved about the potential benefits and the potential risks;
- developing plans and actions that support the positive potentials and priorities stated by the service user, and minimise the risks to the service user or others;
- ensuring that the service user, carer and others who might be affected are fully informed of the decision, the reasons for it and the associated plans;
- using available resources and support to achieve a balance between a focus on achieving the desired outcomes and minimising the potential harmful outcome.
Put simply, I do not feel that the assessing nurse made an adequate risk assessment of the risk to my personal safety, given my precarious mental state, versus the controlled administration of a privately prescribed licenced medication. I feel that refusing me access to a Crisis Bed placed me at significant risk, and I should like this decision to be formally investigated.
This brings me to my final point – being denied access to NHS services. I feel I was denied access to NHS services solely on the basis of taking a privately prescribed drug. The comments made by the senior nurse all suggested that the clinic where I obtained the drug was not a “real” clinic and because the doctor had not seen me in person it could not be a safe or valid assessment. These judgements were made without knowing the details of the prescriber, the official bodies they were registered with or how I was assessed for the drug. Fundamentally, I feel a value judgement was made because I had accessed online private healthcare, and on that basis, NHS services were denied to me.
I believe this to be in direct contravention of the NHS Constitution, Section 3a (p.23)
“You have the right to access NHS services. You will not be refused access on unreasonable grounds”
and specifically the clause
“Access to NHS services is not denied in situations where patients pay for additional private care separately”.
I would like these concerns investigating as a matter of urgency, and with regard to the fact that I remain in a fragile mental state.