Ever since I became a carer years ago for a close relative, I had soon begun to realise that they were not the same person I communicated to when they were well. If there is one major thing mental illness can take away from someone, it is their ability to communicate what is important to them. When a family member or carer has to step in to continue dialogue with their loved one, things can become heated, confused or just down right difficult.
Welcome back to another blog post from a fellow carer. I would like you to check out the following scenario.
Just imaging this. Here we have a patient who talks to the doctor, the doctor sometimes struggles to understand the patient, then the doctor contacts the mental health consultant, the mental health consultant then contacts the care coordinator, the care coordinator contacts the patient, the patient then contacts an advocate and the advocate contacts the doctor, the doctor contacts the social worker who in turn speaks to the care coordinator who then is too busy to contact the patient who in turn does not contact anyone for a long time sinking futher into relapse.
Whats missing from this scenario?
Who is not being contacted or doing the contacting?
Thats it!! It is the carer. Each and everyone in that scenario is important and they all have their roles and responsibilities. However When there is a communication break down, which can often happen, when is it time to contact…….the carer?
Chain in the link
Time and time again, us carers who are looking after someone suffering from mental ill health will look to contact those involved in providing a service for the patient or for our loved ones.
There will be times that every so often carers feel shut out because we may not hear from anyone and yet us carers have to pluck up the courage and start raising issues, us carers have to start asking questions, because if we do not care then the ultimate question is who will care?
I am not stating that there is no reason for carers not to be contacted, there are plenty of good reasons and one being patient confidentiality. This goes to say that someone suffering mental ill health may not wish their family or carer to know what they are going through or suffering from. Some reasons are mental health stigma, other reasons are the fear of relationship break down and one of the most important is patient rights.Embed from Getty Images
We all know there must be a balance to protect the patient, but this also does not mean that confidentiality can be used as an excuse, which it can sometimes be used as an excuse. I am no expert in patient rights or confidentiality, I can only speak as a carer of 11 years. Yet I have seen excuse after excuse as to why I have not been contacted if whoever I am looked after is suffering physical or mental health health difficulties, although at times I can see why information was not devulged to myself.
Us carers walk the fine line between fear, guilt and being isolated or pushed aside. We do not want our loved ones to experience any more pain, but we sit there at times silently waiting and guessing when to act. Us carers wonder when to ask more questions or when to raise concerns. Carers are that vital chain in the link, especially if we are caring for those who struggle to look after themselves.
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Mental Health and the Mortality Gap
It is known that those suffering mental health problems unfortunately have short life expectancies. They lives are about 10 years shorter than those who do not have mental health difficulties. This has become an issue in which the government is trying to tackle, but there is no easy solution.
When you hear of such depressing statistics then many are asking the question why are people suffering mental health problems dying far earlier?
- Is this because suffers are so unwell that they cannot raise physical health problems sooner to the health professional?
- Maybe the fault is with the health profession who might dismiss the patient because the service user is not making sense?
- Perhaps isolation is the biggest killer of those suffering mental health problems as no one is there to listen to them, because the mental ill health has driven others away.
- Or it could be the old numbers game where there just is not enough resources to check up on someone.
- Another problem could be that of medication, which can aid in recovery, but can also pacify a patient to the point where they just do not even care about their own health or at worst speed up physical problems due to side effects.
I am not an expert in mental health and I am sure I am missing far more things off the reasons I have pointed out, I guess I can only speak from carer experience and to be honest I am sure this is also the experience of other carers out there wondering how many years are left for those they are caring for. It is an awful question to ponder, but this is usually on the forfront of many carers minds.
Back in 2013, I went to an interesting event held over at the Institute of Psychiatry. The event was called “Mental Health and the mortality gap: what is responsible and who is to act?”.
The event looked at the challenges and solutions surrounding the physical health of mental health service users.
The panel at the event were experts in their field and suited for such an event.
Where we had Professor Shitij Kapur, Deputy Vice-Principal (Health) and Dean of the IoP hosting the event.
On the panel was Dr Fiona Gaughran, Lead Consultant in the Psychosis Service at South London and Maudsley NHS Foundation Trust.
Simon Wylie, Clinical Lead for Southwark Acute.
Dr Ruth Ohslen, Lecturer in mental Health Studies at the Florence Nightingale School of Nursing and Midwifery.
You can listen to the recording of the event below.
In fact at around 33 minutes into the recording, you can hear me asking a question to the panel on my fears about the medication issue, which in fact I was absolutely terrified in asking, but ever since that event I am glad I did ask the question and I felt grateful to have been giving the oppertunity to do so.
However for any carer out there who is wrestling with such questions concerning mental health, I do urge them to attend events like the one I mentioned above. Even if as a carer you might not understand much of what is being discussed, at least you can feel that you making your presence felt, perhaps even form a network.
I can only hope that the Institute of Psychiatry or its new name being the Institute of Psychiatry Psychology and Neuroscience hold more events like these in future.
Going back to the issue of carers being part of the connection in communication. Us carers have to sometimes ask those difficult questions. I understand that pressure is placed upon the health professionals and there usually is a tug of war on who gets to know what about the patient.Embed from Getty Images
The issue is even more tricky if deep down in the back of your mind you feel your loved one is lacking capacity to understand their own health risks, particularly if the physical health problems become more chronic.
I understand us carers cannot live someone else’s life for them and we should not smother whoever we care for either, but there is a threshold on when to act before its too late, which can be difficult for those providing the care and agonizing for those who are too late in raising the alarm.
In the end we are all part of the chain in helping to provide care for those suffering mental ill health and yes even the service user has to be proactive. We all have to communicate at certain degrees, that being the doctor, the consultant, mental health advocates and us carers.Embed from Getty Images
The NHS is under pressure as resources become harder to reach, the outcome is that families and carers will play an even bigger part to fill what is left out of the gap of health service, to try close the mortality gap and finally to form the connection of communication.
In the end we are all responsible.