PJ WOOLFALL, UNPAID CARER – WRITTEN EVIDENCE (ASC0103)

Response for call for submissions into the invisibility of the unpaid adult social carer.

Synopsis

I strongly believe that the role of carer or carermum as we are often relegated to is pejorative. In order to change our position in the care system and to be respected by professionals in the system our role needs to be elevated in society. We live in a capitalist society, we need to speak the language of that society. While we are still being patronisingly referred to as ‘mum’ we will always be silenced, marginalised and ignored in the care process despite the fact that we do all of the specialist work over a very wide range of skill sets. If you are serious about changing this perspective it must be changed radically because right now we are nothing more than a nuisance factor and many ways have been developed to silence and exclude us from the professional world. I posit that we need to be paid to be recognised by professionals. Most of us are unpaid, yet the work is relentless, visceral and also harrowingly bureaucratic. We are often in a stage of grief in my case as a full time carer of a sufferer of a SMI. I work day and night, especially when he is ill, but every day, without fail, I work in my many roles that encompass the word ‘carer’. I hope you find my reflections on your questions of some use. I apologise for the late submission however I only received it around 7pm this evening.

1. I heartily agree that the unpaid carer and their work is very much invisible. The reason for this is simple. We live in a society predicated on a system whereby those at the top of this system have a lot of money and don’t seem to do very much with the money they acquire. Conversely those at the bottom of the system (and those outside the system) are denied any payment at all for a tremendous amount of skilled work they must do, covering a wide diversity of roles without training, support or any form of compensation. In many cases they work In very dangerous often life threatening conditions. They are completely underfunded or not funded at all and so are not given the respect and consideration for the vital work they do at all. Money talks. Money talks to society about the value of people and the value of the work they do. Traditionally womens’ work, nursing, teaching, cooking, cleaning and the like were underpaid despite having to have considerable skills and often times education. Whilst we have fought for pay parity in the professions, caring is still predominantly unpaid womens’ work in the home. I care full time for a seriously (mentally) Ill loved family member and am unpaid. I am literally on the job 24/7 particularly when he is ill which could happen at any time. We work much harder, in more arduous conditions in both visceral and professional capacities and yet we are paid nothing. If you want to make us visible pay us what we are actually worth. Raise our value in society, allow us to live healthy work/ life lifestyles and be fit and well enough to do our very difficult job. Give us funding for breaks, for simple things like to be able to pay our bills. Raise our status in a high capitalist society in the only way possible whereby the rest of society will take our work seriously….pay us properly.
2. We need to be paid. We need to be recognised under the Triangle of Care which currently is completely ignored by my Trust although on paper it is embraced. This state of affairs is reflected nationwide in carers groups. We need to change the language and deconstruct the way we are perceived. We are regularly referred to as ‘mum’. To our faces. By people who are not our children. This is a pejorative use of a term that carries a lot of discursive weight, mainly blame- at least historically, but ti also serves to put us in our place, tied to a radiator in the kitchen making cups of tea, essentially a bit stupid and a bit useless. Further if we are ‘mum’ we don’t get paid, we are not part of the workforce and yet the world cannot turn without us. We can also be painted as the victim despite our incredible fortitude in dire circumstances that none of us asked for. We are not victims, we are warrior women. We usually know more about our loved ones’ mental illness than that of all of the generalist nurses on a ward put together and we certainly know more about our own loved ones presentations. Are we listened to, are we heard, are we invited? SMIs present in all sort of ways. Each is individual and we are the source of knowledge that should inform the care. We are the leaders of our families the caretakers of our loved ones and of the communities in which we reside, we are the unpaid workforce who, instead of being revered, we are deliberately kept out of the formal care processes despite the legislation of Triangle of Care. Right now, in my personal situation, we do not know the name of my sons CC, we have no way of contacting her, we do not have a phone number, we do not have a care plan, our GP will not give us this information. We have no hospital discharge papers, we do not know if he is discharged or still a voluntary patient, we do not know which drugs he is on, we do not know how to access more side effects medication. My son is having early signs of illness which would not be picked up until he was full blown psychotic by a professional. We have nowhere to turn because we are left out of the care process altogether. The consultant, the MH team and the GP practice all refuse to give over this information because I ask for information, and information is power; Carers, by definition, have no power. We do not have one sheet of paper about my son and his MH at this present time and he has been out of hospital for 6 weeks. This information is necessary for me to do my job as a Carer. How does inclusion become enforced? Fine trusts and pay compensation to the family of the SMI sufferer. They will very soon realise that you are serious about raising the visibility of carers, making our voices heard to those that need to hear them in order to care for our loved ones properly and perhaps, just perhaps, they might come to respect us, our loved ones and the work we do.
3. If the carer is unheard in the clinical setting the clinician and staff are a law unto themselves without accountability. This organisational culture filters down to staff and the accountability is also not in place. Lower ranking staff are scared to speak up for fear of losing their jobs. I have made complaint after complaint about theft of possessions, bullying and harassment including, stripping, manhandling, lack of privacy, isolation, completely ignoring the patient and his needs, refusal to communicate, lying, gaslighting, verbal abuse, negligence, illegal evictions, withholding of medications, forcing medications, divisive practices toward families, suggesting the carer is responsible for the illness, counsel to remove consent, removing of consent without the consent of the patient in order to exclude the carer or any advocate. Most have not been investigated. Those that have were dismissed in the main. They tend to admit to something minor so it looks as though a proper investigation has been done but in the main there is a lot of ass covering. As a carer, you know you will not be listened to or taken seriously. As for advocate organisations, are you aware that they are not ‘allowed’ to write letters with the word ‘negligence’ in them? Our mental health system is in the dark ages, the corruption is palpable. This effects both young and old sufferers alike. Our loved ones are in danger. They have no value, people even see them as a drain on finite resources when in fact they uphold the hidden economy of care.
4. To me the purpose of adult social care is to normalise the experience of life to the level of everyone who doesn’t need care. My son cannot work, cannot drive, cannot attend college, cannot have a normal life due to his medication and its side effects. He needs his medication however we are still not in a place where we have found anything that works for longer than a couple of months at best. He is constantly in hospital, home then ill due to lack of MH services, they see them once a month for an injection and that is all. No other provision is made. No psychiatric or sociological intervention, no support, no care. It is completely up to ‘mum’ to handle everything, long suffering mum, impoverished mum, bone tired mum, overinvolved mum, a bit stupid mum. She’ll do it. She wont ask for any recognition, any compensation for her time. her effort, her life. Ask anyone who is an carer for adult SMIs. They are worn out, they have lost hope, they have little to no support, they are often hated by the person they care for particularly when theyre not well, they have no one to turn to but other burnt out carermums. The purpose of adult care is to ensure that this does not happen. Because now, instead of one severely ill adult you now have two and the burden on the state is high. I couch it in these terms because the burden on the individual is of such little consequence it barely gets a mention ever, by anyone, except all the burnt out mumcarers who are drowning in seas of bureaucracy and institutional loathing, sinking whilst they cling to the last remnants of hope that someone will one day hear them.

5/6 I have a 23 year old son who has lost his former healthy life. In doing so and due to his illness I have lost mine. I only have time to think about him. About what will happen to him when I die. Who will fight for him. We he spend his life lost and forgotten in a hospital or worse, in a slumhostel, being farmed for local government funding, being kept on street drugs by the dealer next door which is allowed to happen because it feeds the system of greed and corporate farming of the mentally ill and homeless. I don’t have time sadly to think of anyone elses issues in the system but if it anything like the MH system it is corrupt, antiquated, and dangerous to our most vulnerable. Some people say that serious mental health sufferers are like people with dementia, they have lost their lives, they do not remember, function and sometimes do not recognise their loved ones, they hate their carers, they must hate their illness, they want their lives back. My son is 23. Grief abounds. I have no bandwidth for anything like making comparisons.

7They could start by doing their jobs. They have salaries. They go home at night and sleep without someone screaming for the voices to stop. Make them do their jobs. Accountability is key. We have no way of holding them accountable. They do what they want which is not a lot. They use consent to stop complaints, even when were complaining about our own treatment, we still have to have a SMI person to consent to their carer doing their job. The NHS do spend a lot of time making excuses, changing their department names and structures, getting their salaries but not really engaging with the lost people stuck in the dystopian nightmare of not only SMI but the system which perpetuates it. To me it seems they do not really care at all. Its just a job.

8The care was even worse. Covid was abused as a way to not do anything (think DVLA). My son’s CC called him, at a filthy hostel, he was suffering paranoia so didn’t answer any phone calls, had no support, she got through to him and decided in her wisdom that he didn’t need a Care Coordinator. I asked her if she had gone to see him. No- covid. I tried to go to see him. No- covid. The Covid card was pulled out of the hat over and over and over again, for SMI people this left them at the mercy of the often sadistic, lazy supply nurses who generally wanted mainly to go home without doing anything at all. During that time, my son went through all sorts of terrible abuses. Nothing could be done- covid.

Better support for unpaid carers

1. Pay us properly for the specialised work we actually do. Do not stop our payments when our loved ones go to hospital, it makes me spit tacks, I do much more when my son is in the hospital, fighting every day to get the staff to do their jobs, not steal or abuse him, get the consultant to allow me to meetings (she does not), getting information or merely the names of the medications my LO is being injected with, getting to and from the hospital for visiting once or twice a day, writing letters of complaint, writing letters of reconsideration, paying for everything because benefits have stopped. My son going into hospital is not just a nightmare for him, it is also for me. While I know he needs to have meds reviews, implantation of the triangle of care is vital…oh and please don’t stop paying them or us….we are still struggling, still working, still unheard. Give us access to funding. Make care in hospital carer led. I offered to go into hospital and take care of him because he got no care from the nurses. Make ward rounds carer led. Consultants seem to think they are absolute Gods, and we are not worthy to be in their presence, this really has to be addressed. The arrogance of consultants and their minions of which there are many, all on salaries, is absolutely palpable toward carers.
2. My work is the care of my son. We are the hidden unpaid worforce this country runs on. I would guess that if you paid carers properly they wouldn’t need to go and get a second or third job. They could be paid for being professional carers. As we should. The off shoot might be that carers get taken seriously and consultants and nurses might even deem to talk to us? Nb. We simply must have access to records, paperwork, meetings etc. Even if we have no voice, we should at least be able to see what is decided by others for our loved ones.
3. I am a single disabled full time carer of a SMI son of 23 years. It is isolating but the facebook carers group has been helpful. I also write a lot and like to help others when my son is well. Caring for a person with an SMI is all encompassing, there is a lot of grief involved however you cannot express it because you are too busy caring and you must stay strong. Everything else does not work well, I neglect paperwork, I neglect eating, I neglect everything to put my son first as that is my job. How can that be supported. I wish I had enough money for a cleaner, enough time to rest, a PA to make sure all the other things on my plate could be done, to follow up on my many complaints some of which get dropped and another professional gets away with abusing my son. I guess again, it boils down to funding. I am on UC so ‘too poor to be paid to do my job’. Also too poor for all of the things listed above. Its not right. But who cares about the carer? We don’t have the energy to make so much noise that anyone would bother to listen. Thank you for listening now.
4. As I mentioned before, I get support from a facebook group. I can do that in a quiet moment and I can support others in this terrible situation. In my opinion the government should be funding and supporting carers not volunteers. Its simply another cop out and abuse of the poor. We need professional support. We do a professional job (without the salary).
5. By professionals in the NHS we are not wanted at all. They see us as a nuisance because we ask questions and ask for accountability, we write letters of complaint that line their office bins and we make them feel guilty. Most of us are desperate. Most of us are drained. Most of us are in a state of grief. We need support, we need recognition, we need to be paid so we can afford a counsellor, can afford a respite break, can afford to put petrol in the car. You will not find another group like us, we are strong and unbreakable, we fight and fight although we know we will not be heard, we are tired but we keep on, we are mothers but we are so much more than that.
6. The triangle of care is already in place and has been for 9 years at least. There should be no unpaid care work in my opinion otherwise its not work. We deserve recognition and no one who works for free gets any respect at all. The poorer you are in this country the less respect you have and that is borne out by the shocking way in which we and our loved ones are treated by professionals. You can refer to my other comments above.
7. Pay us as the experts we are. Professionals only respect high value individuals especially in mental health. We have no power. The professionals have all the power. They give lip service to giving our loved ones a ‘voice’ but they don’t take it seriously because they just do what they want anyway. In my experience the professionals will do anything to keep a carer out of a meeting, without any email contact, will not return calls, will outright lie, will not supply paperwork of any kind and can be rude and supercilious directly to your face. They are trained to be arrogant and they don’t like to be questioned or challenged in any way. That is our job. We are advocates. They prefer their patients to be silent and compliant. There will never be access for us until you elevate our status by paying us a professional wage for our work because its all some people understand.

Putting co-production at the heart of care.

1. We know we are not listened to and not heard. We are kept out of ward rounds, meetings, denied paperwork, email addresses, phone calls. To change this you would have to change the culture of the NHS. Legislation (Triangle of Care) hasn’t worked and they’ve had 10 years to test it. I was told by my son’s consultant with a finger pointing in my face after I turned up at his ‘discharge’ meeting- you have not been invited to this meeting, I have seen you once and that is enough. It didn’t cross her mind that I explain everything to my son, that I am his advocate, that when he gets scared he likes to hold my hand, that I am not there for her to see me, I am there solely for my son. The arrogance is unbearable. These people need retraining but they think they know everything about everything so they wont be able to be retrained. Some consultants are amazing. Often it depends which culture they have come from….mental illness is seen as completely abject in certain cultures and that has infiltrated the kindness one would expect here in Britain. As Ive already expressed, there is no accountability anyway so these professionals treat people worse that scum. Im not sure what you can do about that kind of attitude other than move them out quickly and replace them with professionals who are trained to have a little compassion and ideas of inclusion. We all know the research shows that the carer being involved is best for all concerned, except for those whose power and corruption of it is being brought into question.
2. When my son went from care into adult care when he was 19 he was put into a hostel full of drug dealers, one of whom tried to kill him with a knife. From then on he had paranoid schizophrenia, he was frightened for his life and it never left him. He has paranoia, he heard people shouting vile things at him, he couldn’t get away from the voices, he went absolutely mad and went to live on the street where he felt safe. Thank you local council. It has taken 5 years and only in the last 2 has my son received a diagnosis. Anytime he transitions, from hospital to home for instance, it is hard for all of us. He has been in the hostel farming system for about 2 years, he has been illegally evicted 3 times, lost everything, I just keep having to buy things for him. Its incredibly expensive to have a LO with an SMI. Our lives are not like others’ lives. They never will be. I am nearing retirement age however my ‘job’ will never end. The thought of him being alone and vulnerable is unbearable, especially knowing how violent and inhumane the system is. I cant bear to think about his future.
3. I have never seen co-produced care, except when my son was in the Hammersmith and Fulham PICU ward where they were funded properly, had great nurses who engaged and gave proper care, they allowed them their phones over lockdown, it was humane. I had access to the consultant and I have since called his secretary and she still will help me from time to time. Good care does exist, one in maybe 5 or 6 hospitals….in my experience. Certainly not where I am now and not in my last borough that I left because of the level of abuse my son was receiving.
4. Fund the carer and family. We do all the work in the community now. We have no care at all or not even contact details and a name from the CC here in Westminster. Training them, legislating to force them to work with the carers, none of it works if the people in the jobs don’t have the will. No one likes to work with sMi sufferers and every professional thinks their an expert. The carers are the experts. Directly fund the carers. The people who have a good reason to do good, accountable professional work.
5. Just invite us. To ward rounds, to meetings, to therapy sessions, to discharge meetings, to carer support groups, to high level psychiatry events, to social gatherings. Invite us, support us, listen to us, learn from us. We are the experts in our own fields.

27 May 2022