Unsupported Work To Provide For No Family – The Work Cure?

human value

“Work is good for you” is a mantra inflicted on everyone of working age including mental health service users. I don’t think the reality is straightforward and work can feel perilous when it is insecure, (zero hours contracts being the clearest example), low paid, low skilled with employers whose priority isn’t to ‘promote staff mental wellbeing’. I do work full-time though didn’t achieve regular paid work until I was 33 years of age. Please bear with me as I explain this statement since I feel I need to justify it in case anyone assumes I was lazy or went travelling the world.

When I was 18 I reluctantly dropped out of university with a weight below four and a half stone. I spent the next five years being refed and rehabilitated from Anorexia. At the age of 23 I tried to make a new start with a disabled person’s traineeship for a government funding body. My manager terminated this fixed-term contract after I disclosed in confidence that I was distressed and self-harming outside of work. My life then fell apart and the self-harm worsened with paracetamol overdoses. I was fortunate to meet a community psychiatric nurse who saw beyond the self-harm, encouraged my potential and need to stay busy. I volunteered at a local Citizens Advice for nine years during which time I was hospitalised for countless blood tranfusions and even sectioned on the psychiatric ward due to pressure from A&E medics for services to do something. In my early thirties, while still under the community mental health team, I came across an incredibly hard working, sound and enthusiastic vocational adviser, using the Individual Placement and Support model, who motivated me to finally contemplate a meaningful, appropriate and chosen job.

I believe the structure of work helps me now though work is inherently stressful. I never want to imply that I have done it and so should others with mental health issues. I have seen this bullying attitude amongst peer leaders who had chosen working in a supermarket or self-employed consultancy on mental health over claiming benefits which they saw as a mark of disgrace and welfare dependency. Some service users progress to working within mental health services in peer worker roles which are usually underpaid and undervalued by their NHS trusts. However, I decided to do administrative work away from mental health care, since I feel too much of my life has been lost to mental health already.

I have many friends who don’t work due to their mental health and I would always advocate for their need to be left alone by the Department of Work and Pensions (DWP) and the various organisations, which can include NHS trusts and mental health charities, acting as their agents. While the fear of being made to do ‘any’ job, if found fit for work, did propel me to act before I was forced, I don’t support this underlying threat tactic.

Apart from the benefits questions, I have been wondering whether there are unspoken disadvantages to being in work when you have ongoing mental health challenges. These disadvantages include health services seeing an employed person as recovered, the lack of support in the workplace, the inability to disclose less appealing diagnoses, for instance ‘personality disorders’, eating disorders or addictions, and the difficulty of accessing benefits support which enables you to keep working.

This week I attended a CCG organised ‘Coproduction’ workshop on local care and mental health using my annual leave so that I could speak freely. A consultant psychiatrist was the speaker representing the main mental health trust in this area. His presentation and words were: “only the most severely impaired should access secondary services.” I interrupted at this point to ask how he would define ‘severely impaired’ and if it could include people in work. The speaker said that it would not because: “they wouldn’t want to see us as they are out working providing for their families.” I pointed out that someone in work could still have a crisis, indeed could need hospital admission.  I felt a lone voice in a room of professionals where others probably agreed that all patients who can just about function should be discharged back to primary care to release capacity in the system, outing those who are the equivalent of bed blockers in hospital.

There are logistical difficulties of accessing mental health services if they decide you deserve an appointment when you work. Even the mental health services embedding in primary care operate during core work hours and may be in a town away from your place of work. Since I’m fully aware of the huge demand on specialist services, it does kind of make sense how services view someone working, even if signed off sick, as more able to fend for themselves. Perhaps there is also a mistaken belief by professionals that working is a curative therapy which then creates a lack of comprehension why someone, particularly with non-psychotic conditions, should become ill when in work. Services only want to see people short-term to work to Recovery model goals, so if you have achieved paid employment then this can in itself be regarded as marking the end of the treatment journey.

My experience of applying for Personal Independence Payment, once Disability Living Allowance ended, is that working counted against me. The medical report from my face to face assessment with a general nurse employed by Atos repeatedly said “in her social history she states that she works full-time with no specialist input.” While I scored 6 points these were on account of my eating disorder, thankfully being in a job doesn’t denote that I can eat three meals a day or prepare a simple cooked meal. The assumption made by the assessor and the DWP is that if you hold down a job then you can do all of the activity descriptors involved in daily living. I was turned down for PIP and had to challenge the decision. The short-term award I did get on mandatory reconsideration has meant that I have to go through this claiming process 18 months later, explaining all over again how I can be employed yet still find it difficult to engage with other people face to face.

If you do become more unwell while at work, whether caused by work stress or personal issues, then there may be no support to prevent your job loss. Large employers usually have an outsourced Occupational Health service but this tends to amount to advice for the employer about when the employee is likely to return to work. There is no advice directed towards the employee about how they can cope with work. The provider used by my current employer is OH Assist, which used to be a division of Atos, the private company which performs benefits assessments on behalf of the DWP. The assessment of the employee’s health and subsequent advice report is done through a brief telephone consultation. The Occupational Health Adviser may be a nurse or OT who has no mental health knowledge, leading to a short and generic report for the employer, which is more of a tick box exercise than a considered specialist opinion.  I have had to pay my private psychologist to write a report for my line manager in the hope that it may lead to reasonable adjustments and understanding of how to support me at work.

Many large employers do have an Employee Assistance Scheme (EAP) which is telephone based. My experience is that calls are short, possibly to target times of 10 minutes, unless you wish to access eight sessions of phone counselling. Since the EAP is also outsourced to a national company, there is no familiarity with the employer you work for and their policies. I was overpaid salary of thousands of pounds in error by my employer but had no way of sharing my pay slips with a phone adviser who would be someone different if I called again. The extent of the advice given during 10 minutes about my overpayment was that the employer should be ‘reasonable’. I experienced even greater stress when my employer then demanded in two threatening letters that I repay the total overpayment back in two months leaving me with a nil income for those months. In fact, the overpayment recovery deductions set amounted to more each month than I would have been paid. I had to use my annual leave to see a local Citizens Advice to figure out how to respond to the overpayment that wasn’t my fault though still needed full repayment.

Job retention support is non-existent despite the way that work is a policy priority in mental health and the Five Year Forward View.  I approached the Shaw Trust and was told that they weren’t commissioned to provide job retention and the only way they could help me was if I gave up my job to look for another. I have seen the Disability Employment Adviser at the Jobcentre and was given a leaflet for an NHS funded Improving Access to Psychological Therapies service offering six sessions of web chat and was told that Access to Work wouldn’t cover anything for mental health except taxi fares. After much internet searching, I found Remploy, funded by Access to Work, has a Mental Health Support Service. I self-referred to this service and understood that there would be six months of support. I later realised that the support was telephone based whereas I needed someone to come with me to meetings with senior managers at work. Remploy is in partnership with Maximus, which is another private company that provides benefits assessments for the DWP.

Two weeks after I self-referred, a Vocational Rehabilitation Consultant phoned me and offered the only face to face meeting I would have in six months apart from a 13 week review he said could be done in person or over the phone. He made clear that he was fitting me in on his way by train to another client. His office address is over 150 miles away from where I am based. During our meeting lasting half an hour, he asked my diagnosis and when I said it was ‘Borderline Personality Disorder’ he suggested that I was a ‘complex lady.’ He said that he had other clients with BPD but they did not self-harm and he knew how with BPD one day he may be my best friend and the next day my worst enemy. I tried to explain that I didn’t experience this perception and found such a stereotype offensive. He had emailed me a lot of leaflets produced by Mind in advance of this meeting and asked if I had read them yet. I was in crisis, attending A&E for wound repairs, so reading the leaflets was the last thing on my mind.

My personalised action plan from Remploy stated that the “reading resources were provided to help her better understand anxiety, depression and self-harm so that she can try to develop coping strategies to better manage her mental health.” He drafted a letter to my manager which I had to ask him not to send since it stated that she was the cause of my anxiety! When I gave feedback that the leaflets were too basic and his service didn’t meet my needs he replied in several emails saying:“We deal with individuals who have mild to moderate mental health difficulties who are already in employment and do not require intensive support. I feel you are not benefiting from the mental health support service (MHSS) which Remploy deliver as it provides a much lighter touch as I think you require a level of intensive support which is not designed into the MHSS as it is not designed for that purpose.”  He never suggested where this intensive support should come from. I still have to provide him with monthly updates until the end of the six month support period, even though I have withdrawn from the service.

My employer does have Mental Health First Aiders (MHFAs) who can be approached in the same way that an employee could ask for physical first aid if they had an accident. These MHFAs do have two days of training. I believe that staff with the right qualities training as MHFAs can be a helpful resource in the workplace though their role is to listen, signpost but not to give advice. However, it isn’t easy to approach MHFAs you know as colleagues. While the conversations are meant to be confidential I do have a doubt about whether I may regret being open if later interviewed for a promotion by a colleague who is also a MHFA and may see me in a different light. I have not managed to tell any of my colleagues about my diagnosis as I am sure it would damage my career prospects. There are so many negative articles online about BPD that a manager would only have to look at the wrong Walking on Eggshells type web page to form a judgement that the employee was a problem.

In several places of work I have heard colleagues use what they call ‘gallows humour’ about customers, such as saying those who self-harm seek attention, that it was a waste of resources that an ambulance helicopter was called out for a resident who had taken an overdose and that they wished one of their clients would get run over by a car as he served no useful purpose as a drug addict. I still hear where clients are called ‘manipulative’ as though this is definitive. Even though the colleagues are not talking about me, I start wondering what statements they would make if they knew that I was a frequent user of A&E, covered in scars under my long sleeved shirts and trousers. I want to educate them on the distress behind mental health issues but don’t want to reveal too much about my own history that they either feel sorry for me or form a different opinion other than one based on my strong work ethic.

There is the isolation of being single and in work (I have no family to provide for despite what was suggested by the speaker at the workshop). I have no-one to turn to after a long day in the office where I may have experienced conflict, stress or bad news, for instance there is an imminent restructure. It takes me several hours in the morning to psych myself up to go to work and once home I have no energy left. I eat something simple like cereal, having snacked for most of the day due to my anxiety, I then phone my surviving elderly parent and go to bed. The events at work and whether I said the right thing or have forgotten any task go round in my mind inhibiting sleep. I know that the next work day offers more of the same routine, perceived criticism, uncertainty and self -doubt. Working has created distance from a few friends who think that it is alright for me now I have work and don’t have to worry about work capability assessments. Government policy pitches disabled people against each other. We compare ourselves and who needs the rationed resources more since benefits and services were cut as part of austerity measures. I also feel I have no energy to talk to these friends about their encounters with mental health services when I just need total rest after forced company in the office. I don’t feel like using the computer or answering the phone since I fear I will have no resources left to go into work again.

I often feel like a disaster survivor unable to tell my colleagues what has happened to me through iatrogenic and personal traumas. My world is clearly not theirs. I share in their news of families, childcare arrangements, children’s exam results and their own career promotions. I don’t say how unhappy and empty I feel inside or that I won’t see anyone over the weekend as otherwise I wouldn’t recover to see them again on Monday.

If work is good for you, it should be good to you as well. Work needs to be with a supportive employer, have a benefits package with well funded employee wellbeing resources, open minded colleagues and local NHS and voluntary sector services that don’t exclude the ‘high functioning.’ There should be a raft of supports that are concerned about job retention and not just a job placement, job done approach. Voluntary work should be valued as a meaningful and important part of life for those whose mental health condition means they shouldn’t be pressurised into work to targets or to keep the welfare bill down. We need to work together as allies, those in and out of work, to make sure our voices are heard and that work is chosen, decently paid, healthy and fair.

Psychiatric Liaison – adding insult to injury?

According to the Royal College of Psychiatrists, “Liaison Psychiatry is the sub-speciality which provides psychiatric treatment to patients attending general hospitals, whether they attend outpatient clinics, accident and emergency departments or are admitted to inpatient wards. Therefore, it deals with the interface between physical and psychological health.” There is a ‘Faculty’ for Liaison Psychiatry at the RCPsych and they are running a pilot to develop a credential in Liaison Psychiatry.

The academic and training view of RCPsych is a world apart from my experiences of Psychiatric Liaison in my local Accident and Emergency, (A&E) department. I am emerging from a mental health crisis which involved at least 12 visits to A&E and minor injury units within the space of just several months. I self-harm by cutting my body as a last resort during times of extreme distress. The self-harm is not ‘addictive’ in nature but it is incredibly painful. I harm for the need to get this act over with in order to have a chance to feel better later. I feel compelled to cut and displace the distress, thereby enacting deep inner pain which is beyond words. In the past I have needed surgeries, multiple blood transfusions and countless stitches. Attendances at A&E have been only the tip of the iceberg of my self-harm and it has been far more usual that I go to see the nurses for wound sterristripping at my GP practice or self-treat.

If Psychiatric Liaison does bridge the interface between physical and psychological health then I may seem an ideal candidate for its expertise. My self-harm does have physical complications, not least iron deficiency anaemia and open wounds that take time to heal. I welcome advice, practise harm minimisation and am crying out in pain during a cycle of self-harm. Recently when cutting one area of my body I hit major veins and the blood loss necessitated ambulance call outs. After the second ambulance I decided to avoid harming this area of my body as I don’t want to bleed to death. I am resolved to reduce the harm and minimise my ‘impact’ on local overstretched health services.

I must report that my experiences with Liaison Psychiatry have added insult to injury. A ‘good’ visit to A&E involves not only physical treatment with adequate anaesthesia, but the treating medical doctor agreeing that I don’t need to be referred to the Liaison or Crisis Team, (the Team which is on call depends on the time of day or night). I explain that I have seen the Crisis Team and Psychiatric Liaison in the past and they have nothing to offer. I usually wait hours in the department for the Liaison Team to come on duty or finish with other patients then they permit me a ten minute chat. This chat usually consists of asking why I am there, was the self-harm superficial, (would I be there if that was the case I wonder?), have I tried counselling and how will I get home?

The Liaison practitioner may feel the need to draw up an action plan which will say something like ‘aware of crisis numbers.’ Since the crisis numbers such as the Samaritans and the local mental health helpline are widely available I don’t need to be given them. I don’t see why I should have waited hours on top of the prior three hours wait for physical treatment for this unnecessary assessment which will just tick a box for the service.

My resistance to Psychiatric Liaison probably relates to the fact that they work for a mental health trust which discharged me in 2015 by saying they would not see me again while I had the ‘same presentation.’ Since I have no history of psychosis I am not sure how I can morph into a different presentation which would be more agreeable to the mental health team. Over 16 years ago I was given a diagnosis of Borderline Personality Disorder and this still follows me around even though no-one ever reviews it. Previous GPs have made referrals to the ‘Access Team’ which get batted back with conversations with the GP along the lines that I should ‘take responsibility’. I have worked full-time for the last seven years and pay to see a private psychologist.

I don’t know what else I can do to prove I am ‘taking responsibility’ except perhaps drop off the radar of all health services. Sometimes my death would seem like a better outcome to mental health services than my attempting to ask for help that doesn’t exist. I know that Psychiatric Liaison presents a dead end since they have no services to refer into which wouldn’t be hostile to that referral. My local mental health trust is taking part in the ‘Open Dialogue’ pilot but this approach, which comes with much praise for its innovation, would never be open to someone in my type of crisis.

My recent experiences of Psychiatric Liaison have confirmed my misgivings about this service area. I was referred to Psychiatric Liaison by a very thorough medical doctor in June. The doctor spent over an hour suturing wounds. He even said that he didn’t like to see those kind of wounds on anyone and believed that I deserved help and that services had changed, with new options available, since they had discharged me several years ago. He asked if I was under a psychiatrist and I said that I hadn’t seen one since 2013 and services would have no desire to help again.

But in the spirit of being a co-operative patient, and truly being grateful that he did bother, I went along with the referral. The problem was that it was 11.30 pm on a Saturday once the physical treatment was over. The doctor escorted me to the Clinical Decision Unit in the hospital to wait for the mental health team. I then endured a nine and a half hour wait sitting in a chair for psychiatric ‘assessment’.

I would expect the Crisis Team to cover at night where Liaison are commissioned to operate from 8 am – 8 pm. However, it seemed like the Crisis Team didn’t want to come to the hospital that evening and I had to wait for Psychiatric Liaison to arrive on shift on the Sunday. I was seen at 9.15 am by an Occupational Therapist and another quieter unknown team member who chatted to me for ten minutes. I explained I was very distressed and needed to get home. I am a key contact for an elderly parent who would wonder where I was since I hadn’t phoned her that day. The OT still insisted on ticking boxes by talking and drawing up an action plan. I signed the action plan rather than waiting for another ten minutes she said it would take for her to write out this plan.

I was never sent a copy of the plan and have no idea what I signed. I imagine that the plan may have said that I had the crisis numbers and was to go back to work. There was no apology for the nine and a half hour wait in the chair or understanding of the distress and total lack of sleep this had caused. I had tried to self-discharge during the night but had been told by medical staff that the A&E doctor had been worried enough about me to call the police if I left the hospital. Since I have no wish to waste police resources I figured I would need to stay no matter how uncomfortable.

On my next two A&E visits I did see a consultant psychiatrist which seemed unusual given the community mental health team operates with locum psychiatrists and has had no consultant for many years. I was initially impressed by the consultant who had read notes I made in 2015 saying I didn’t want to see Liaison due to the long waiting time which led nowhere. My second meeting with him was less thoughtful due to his assumptions. A friend had accompanied me to A&E and the psychiatrist seemed more interested in talking to her about what she felt was behind my behaviour rather than asking for my account. The psychiatrist said that they didn’t want to make it ‘too comfortable’ for me to attend A&E or they were ‘enabling’ me. I tried to explain how I didn’t enjoy attending A&E and was going for clinical reasons, ie a wound that needed closure through stitches and not because I was a bit upset.

My friend did voice that she thought I needed help from services. The psychiatrist, who was meeting me for only the second time, said that the community mental health team couldn’t help someone like me as they only saw people with a chemical imbalance and were better when there was a clear goal like a medication review or getting someone into voluntary work. The psychiatrist said he didn’t think I was someone who needed to be on medication. He also decided that he would have a professionals meeting to come up with a ‘plan.’ He intended to contact my GP and a primary care nurse who I met only twice two years ago. My private psychologist knows me extremely well but he didn’t contact her at any stage though I supplied her mobile number and email address.
The psychiatrist then said that I wouldn’t see him again even if I went to A&E and he wasn’t my therapist. I asked the psychiatrist for sleeping tablets but despite being based in an A&E department he wasn’t able to prescribe any! He instead faxed a plan to my GP suggesting he ‘considered’ a 14 day course of zopiclone at the lowest possible dose. I tried to explain that I have no history of dependency on medication yet still it felt as though I was asking for hard drugs. Thankfully my GP prescribed sleeping tablets and a tranquiliser without questioning my motivation. I use this crisis medication very sparingly.

The psychiatrist also told me that I should go back to work, this was despite my being physically depleted at a level where other patients may be transfused and at risk of my problems spilling out to colleagues in my distress. I only took one week off work but again it was as though no-one except my GP and psychologist recognised the need for me to do this and spend time with supportive friends. The psychiatrist discharged me to a crisis café which is operated by a voluntary sector organisation and only open for two evenings a week. The crisis café does not offer emergency appointments but feels to me like an extension of their day services which have been reduced by funding cuts.

Since these encounters in A&E I have gone instead to a distant Minor Injury Unit for treatment where I won’t have to see Psychiatric Liaison. These units are nurse led and can perform stitches. However, since stitches take a long time the two nurses on duty will use stapling instead. The staff advise that local anaesthetic isn’t needed with staples but I have felt immense pain when wounds were washed then stapled without any pain relief or anaesthesia beforehand. I feel that Liaison is being used as a deterrent to keep people like me out of A&E yet the consequence is that we will instead have to find other urgent care settings willing to treat us.

When I visited the crisis café one of the paid workers said that a member of the Psychiatric Liaison team had visited the café to say that they are focusing on trying to reduce the number of A&E attendances for mental health reasons as there are too many when A&E is under pressure. My view is that a crisis café which is open for eight hours a week isn’t going to offer a real alternative to A&E and statutory services for someone in acute crisis involving active self-harm or suicidal feelings.

One of the alternatives I used during this crisis was a London A&E department. This experience was a more extreme example of Liaison being used as a deterrent. On being referred after stitches by the doctor to Liaison I was taken to a separate area of the hospital where there were bare rooms with security guards outside them. I was searched and patted down, including my breasts being touched without my consent, by a member of staff who confiscated my bag containing all belongings such as my keys and mobile phone. I was then given a blanket and told to lie down while waiting for someone to see me. I hadn’t eaten, drank or been to the toilet in six hours and I felt terrified. It felt as though I was being detained like a suspect in police custody.

The Liaison nurse did see me after 30 minutes and was extremely apologetic during our ten minute chat. She said that all A&E departments in London were like this as it was their ‘protocol.’ She recognised that I wouldn’t go to this hospital ever again. I needed to use friends and my psychologist to deal with a traumatic stress reaction I experienced within the next few days. I blamed myself for ending up in this A&E and having this reaction, even though it was a London walk-in centre that had sent me there as they couldn’t perform the stitches I needed.

Psychiatric Liaison as a service development needs to be clear about its practices including not using de facto detention in hospitals, such as threatening to call the police or positioning security guards outside bare rooms. This type of detention is illegal without formal sectioning. The assessment should be voluntary and advocacy services are really needed. I see no benefit of Liaison services to people who recurrently self-harm and cannot access help in the community other than by paying for this. However, I can see that Liaison may be able to signpost those with drug or alcohol addictions to treatment or to assess an elderly confused patient for dementia.

I did have one helpful experience in 2015, and I wrote to the Trust to give a compliment, where I was on a ward for surgical debridement and closure and the psychiatrist had visited me on the ward then liaised with the surgical team about my needs. The psychiatrist had been encouraging about the progress made over the years and of the view that secondary care services should offer support. While commissioners are investing money in Liaison there should be clear outcome measures and user involvement in the approaches offered. There should be brief interventions not just a one off chat amounting to ‘how will you get home?’.

The Deliberate Self-harm Team, which was eliminated at the local hospital when Psychiatric Liaison came into being, did offer problem solving meetings and handed out a first aid kit for self-harm which ensured clean blades were used and thick sterristrips were tried at home. This dissolved team did at least have a clear purpose and understanding of those attending who do external self-harm.

I would suggest that Frequent Service User Managers for A&E also offer a more meaningful service. Fortunately, I do have a care-coordinator through a high intensity service user project funded by the CCG. The role of this specialist nurse is to meet people whose attendances have hit a certain threshold and to understand the root causes of their presentations to A&E. She takes a holistic view and understands that crises can be triggered by many social factors such as benefit sanctions, financial, housing and work problems. This nurse has given me a mobile number and suggests I call before things escalate. She has accompanied me to meetings with the HR manager at work given the recent crisis was triggered by my job.

She has also visited the police station when a neighbour’s antisocial behaviour put me on edge. She is not at all punitive, shaming or deterring me going to A&E and recognises that until recently I hadn’t attended for over 16 months. Instead she recognises that the A&E visit is necessary and I know myself best, but to suggest other options which may also help before reaching that desperate point. With her input, I have developed a care plan for my self-harm for the GP practice which indicates my choice of dressings and the nurses’ need to understand that I am in pain with injuries.

I am very grateful that this specialist nurse was also able to ask Psychiatric Liaison not to arrange a professionals meeting and for a note to go on my A&E records asking that I am not to be referred to the Liaison team unless I request it. I don’t think this note on my records is ideal given I am in huge distress when I do go to A&E, but it is a means of saving me further distress in being exposed to psychiatric assessment for no purpose. Harm minimisation can apply to steering clear of pointless ‘interventions’ as much as it can to avoiding life and limb threatening injuries.

There is a risk of referral to Psychiatric Liaison raising hopes of help available to those who self-harm or are suicidal. I guess I have reached the point of knowing this help doesn’t happen so hope is futile. This is another reason why referral should be considered and not automatic as it is a false expectation of help. A ‘plan’ won’t pay for my psychology sessions as I find myself having to apply again for Personal Independence Payment.

A ‘plan’ doesn’t provide a support service instead it is another message that this is ‘all down to you’. I have found the medical staff far more compassionate and helpful than Psychiatric Liaison so I don’t see that the Liaison staff have a training role to do in the department.

I am always apologetic to medical staff in A&E and ashamed of my presence there yet the medical staff are usually saying that I should attend if I have a wound that needs proper closure. The timing of the psychiatric assessment, after long waits for physical treatment, is also misplaced given tiredness and pain may make going home the best option.

I hope that there can be debate rather than gratitude for Psychiatric Liaison as its rolled out to all general hospitals. Psychiatric Liaison in its current form could just be adding to the pain.

Rita Binns

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