Welcome back to another blog post from an unpaid mental Health carer. Just a day ago of this blog post, I attended and spoke at the South London & Maudsley trust Psychology and Psychotherapy conference 2019. It’s theme for this year was on involving families and carers. I was excited to be part of the event to get my thoughts out to the audience and on reflection, I felt I pulled no punches. With over 20 years of unpaid carer experience, I have seen and experienced quite a lot in regards to carer involvement and I expect there is more to come. One day I should write a book about it, but this is probably a very long way off.

Still, I feel a lot is at stake and there are times we have to be passionate because we are dealing in peoples lives, since that is the nature of business. Connecting with others at a deep, but difficult level. However when things work out, the rewards pay very high because we can reuse what we have learnt. Yes, I am talking about psychology and psychotherapy. I am no expert in these subjects, but being involved at the NHS trust and in the community for long, I suspect that I have been exposed to such powerful, wonderful and mysterious methods.

On reflection, I was asked by the NHS Trust therapy adviser, what does it feel like to be involved as a carer, what does work and what does not? I felt this was such an important question to ask at the conference since I am not sure how far my influence goes to other carers I network and engage with, which seems to be increasing rapidly. I can only pass on my knowledge and hope others can learn from me.

What I feel works for being involved as a carer

I hope to make things as simple as possible, this is not an exhaustive list and is not in order of importance, however if it was, then “identify me” would be the first. If a carer is not identified and recorded, then it is hard to engage or listen to them.

– Identify me
– Ask me
– Listen to me
– Clarify if you are not sure
– Be patient with me
– Respect me…to a point
– Forgive me
– Involve me
– If involving is difficult, then update me
– Sympathize with me
– Refer me
– Assess me
– Empower me
– Understand me
– Engage with me
– At times I need therapeutic support
– Mind your language

I told the conference that I need to blog about this due to lack of time, but I hope staff can learn from what I have listed. I have also been asked by a carer to write some checklist of what carers need to take note of when starting out on a caring journey. Lets look at this list more closely.

Identify me

I told the conference that it is not only the NHS trust that is having a difficult time identifying carers, many NHS trusts are struggling. What could be the cause? There are many difficult and complex reasons, however leadership is important, then comes the system information is placed on, then training and then learning from audits. As a carer, if someone comes up and asks if I am a carer, then it can put me at ease, although this is not the same for others as the word ‘carer’ scares them.

Ask me

Sometimes an patient does not want to engage with the service, so I suspect that health professionals should at times request help from the carer, especially if they want some history of the patient or service user.

Listen to me

There have been times when an NHS staff would tell me that they cannot listen to me and hung up the phone. This was not common incident and I never complained, because I thought this was sometimes standard procedure, but there was also this fear that if the staff was reprimanded, who would replace them if they were going to be replaced at all. I would often think to myself if it was me being unreasonable or if the health professional was going through a god awful time at work. Even if just listening and saying nothing, would at times be very helpful to me.

Clarify if you are not sure

There is no shame in getting things wrong. I would much prefer if the health professional ask for clarification on an issue before making decisions that turns out to be wrong.

Be patient with me

There will be times, when I feel my world is collapsing in. It is true that a support group can helpful, but carers cannot live in a support group. They do not know hardly any coping skills or are given much apart from carer assessment, which unfortunately is mainly recording information rather than relationship forming. The state of the Mental Health system tends to focus on the “service user”, after all they are using the service? Thus families and carers eventually build up some resentment or misunderstandings against the goodwill of staff, unfortunately staff might have to be patient with carers.

Respect me…to a point

I do not know the case loads of NHS Staff, nor do I aim to be confrontational. I can only think it be fair if health professionals not loose their temper, raise their voice or be very blunt. Still, we are all human and most of the time I have seen carers pick up mental health needs due to being worn down by the system.

Forgive me

Did I mention we are only human? Expect mistakes from me as a carer, I just do not understand the system at times and things change. I sometimes will make mistakes, say the wrong thing out of emotional turmoil or even fail to engage. I can only hope health professionals see families and carers as fragile at times. They have a lot to cope with depending on the situation.

Involve me

This extends to all that is mentioned in the blog, most families and carers hate being shut out, worse they hate being separated from who they are trying to support, especially when they are in crisis. Carers want to be invited to meetings, copied in on some emails, recorded as in need of assistance or referred to a carers network.

If involving is difficult, then update me

Not all times can families and carers be involved, it really is a case by case method. Sometimes the relationship between the families and patient has broken down. It happened to me, but what I do not want to hear is “Good bye and good luck”. Or told that to be involved in someones care, I need to go through them. Real life does not work like that, family ties or emotional ties are not just cut off and things are strained.

Sympathize with me

Health professionals do not really have to be sincere, they can just try and sympathize. I am aware not everyone can be like this. Sometimes there is little that someone can do about a situation, life can be like that. Carers can really depend on what someone says or does. I am well aware that after a while health professionals can become thick skinned and it rubs off on who they deal with.

Refer me

Not all families and carers want to be isolated and left to cope. There are so many resources and groups crying out for carer participation. This also goes to GP practices who do not refer carers to carer centers or groups. Lord knows how many times I have heard the carer centres I attend mention this, I am not sure whats the best way to tackle this either. After a while, audits and records show carers being missed out by systems. Maybe we are just all so busy being under pressure from deadlines and schedules.

Assess me

Being assessed as a carer is not my favorite past time. Mainly because I think not much comes out of it. I am not expecting any funding or financial help, but it is important there is a ‘carers’ pathway or plan. Once I have a carers assessment, not much else is heard from it or even referred to. I just wait for the assessment next year and do the whole thing again. Still, Carers assessments are an important part of a carers journey, health professionals get to pick up information that can help in decision making or support the carer in case something is picked up that the carer needs to prepare for. Unfortunately I am at the stage of querying if assessments are being done and who is doing them and what this leads to. A very painful journey. It is not only carers assessments that can help carers, there are other means of assessing the carer, but somehow it must be relationship forming. I can only pour scorn at how the system has turned out where the Local authority does the assessment without much of an idea of the carer and/or patient and then disappears. No relationship, lack of follow up, lack of preparation for the assessment and god knows what else.

Austerity anyone?
Empower me

I am not really expecting the majority of health professionals to do this. This is mainly aimed at trust carer leads, involvement leads, engagement leads of trusts and CCGs. Families and carers know full well that there are other carers out there going through the same issue. They want, ought and should network and learn from each other to learn how to navigate the system. It should not be that a mental health trust should be the gateway for carer empowerment, but NHS staff should work on bringing carers together. To many times on involvement I see the same person doing so many things. The more carers connecting and helping each other out, the better. Carers are crying out for carer peer support, some areas around the UK fair better, not sure how or why.

It is not always the health systems fault, carers need to be encouraged and face that they cannot do the journey alone. The health and social care system to so vast and complex as it is. To make matters even more difficult the system can be held to government policies, which in turn lacks engagement to the community, especially if the community is fragile already.

Carers must be empowered to help themselves, help each other, be a critical friend and engage with health systems. Carers must be involved query why things are the way they are and not be told nothing will change.

Understand me

This is difficult if I am not identified as an unpaid carer, although it is not a hard and fast rule. It is all about relationship forming with the carer, sometimes there will not be time for this due to caseloads and lack of resources. Still, with every talk, meeting or engagement with a carer, there is a chance for the health professional to understand the carer. What is the carer saying, how are they saying this? What is their body language? Things like that and more.

Engage with me

If I loose my temper out of frustration, I can understand why there is lack of engagement and sometimes when things go desperately wrong, I can understand why the health professional wants to hide. I have seen it happen to myself when a carer has been failed by the system and lashes out at anyone and everything. This in turn makes me think if I have done something wrong. It is only natural, but if engagement is completely cut off we then validate the systems failures. I can only hope there is some form of recovery where both the patient, carer and health professional work together to tackle the issues of recovery.

At times I need therapeutic support

This is severely lacking in the system. Maybe staff are not as trained in therapeutic as they used to be. There is just lack of time, everything seems to be more processed these days, I am not sure what is the correct word for it. I suspect because of safeguard standards, auditing, confidentiality, protocols and lots more. It can be tough to talk to anyone because of the way things are. I am probably one of the most connected carers in the country and yet still feel cut off at times, imagine this for carers not involved much or have little idea of the mental health system or even health system.

Due to a lack of psychotherapists in the NHS, carers just have the support group, which unfortunately can lack the time and tools to tease out what issues the carer is tackling mentally. This leads on unfortunately for carers having to become empowered and try support themselves. It does not help if the support group is only running once a month, even though there maybe more than one support group running in the area. An unpaid carers mind does not just switch off after attending a support group. There must be other resources tooled so carers avoid ending up as the patient, but how? Another blog for another time.

Mind your language

It only takes one word, just one word to trigger the carer for life. It is so important, especially in the mental health system for people not to judge, we are all suffering. Yes, some more than others, but it is not so easy to tell. Some are very good at keeping it all in, some have the tools just to cope, but we all know that coping is not enough, there needs to be some healing process.

Back on to language, out of all the warnings, this is one where I can just about forgive. Life is so fast paced that we often do not think what we are saying, we do not even think about the impact of what we say. Say the wrong thing and the carer could just give up caring. This one is very tough, we cannot just easily train people to understand the triggers. I suspect receptionists at GP surgery can be prone to this. It is foolish to think access to health system only starts and ends with the health professional. From the ward cleaner to human resources, we all promote health and need to be aware of how we engage with others.

What I feel might be difficult for me being involved

I am going to update this list in the future, but thought to at least compile the list

– A rule of thumb, the opposite of what has just been mentioned
– Avoiding me does not work
– Not respecting my confidentiality
– Being rude
– Not responding
– Not listening
– Failure to refer
– Politics
– Jargon as a barrier
– Not acting on carers judgement
– Lost information

Thank you for taking the time to read this.