My research diary

Days 5 to 9

My last blog ended by saying I was feeling anxious.

It got worse.

I had been being strong and supportive for my family. I don’t know how many other people experience this, but I have the ability to be strong and in control when other people are in trouble. So it could be being a passenger in a car and the driver taking a wrong turn and getting lost. I am mostly able to be calm and supportive and encouraging while everyone else is flapping. In my work life I was able to work for a deadline and get everything done properly and on time. In personal dramas I am able to take control of the situation, whatever it may be. It’s like I thrive on danger and adrenaline and I do things I never knew I could do.

The down side to this is after the “danger” is over. I can go from being strong and decisive one minute to being weak and vulnerable and scared the next.

I think this is what happened a few days ago. I was being strong and capable for my family, then as soon as they were feeling less vulnerable, my vulnerability soared. I know this happens, I have experienced it many times. The result is complete helplessness and fear. For a few days I try to maintain semi normal life, but I struggle. Then I give up and just zone out. My feelings are numb, I feel vacant, I experience heightened sensitivity to sound. I want to hide away and sleep forever. I want everyone to leave me alone but secretly crave help. I isolate.

And then I start coming back to life. In this instance it was a phone call from the health centre telling me I needed to book a routine appointment. The following day I went to see my GP and told her my fears and concerns. She listened, she made a suggestion about the possibility of staying with family until I felt better. I cried.

The next day I was me again. I was (and am) still tired, the experience always takes a lot out of me, but I was functioning and had emotions and wasn’t scared of people any more. My head was full of ideas, I was back in doing mode.

Which brings us to……

Days 10 & 11

My head is full of ideas and I don’t know what to do first (no change there then).

I started exploring the (many different) NHS websites to see if I could find some information on how we, the public, can influence mental health care.

When I saw my GP she mentioned referring me back to the mental health trust. This is the one that sacked me because I was too anxious to attend. She said that it might be possible for them to come to me. If this happens, I think it could be helpful.

So, I’m going to try to find out all I can about my local trust.

This is a document I created from the NHS website.

It explains all the different types of trust and what they do. Here is an excerpt about Mental Health Trusts:

What is a mental health trust?
Mental health trusts provide health and social care services for people with mental health problems. Many NHS trusts have merged over the past
couple of years and may now be governed by a foundation trust, which provides a mental health service. Again, you may hear both terms mentioned for
the same trust.
Mental health services are provided through primary care, such as GP services, or through more specialist care. This might include counselling and
other psychological therapies, community and family support, or general health screening.
For example, people experiencing bereavement, depression, stress or anxiety can get help from their GP or informal community support. If they need
more involved support, they can be referred to a specialist mental health service.

More specialist care is normally provided through NHS trusts or local authorities. Services range from psychological therapy to very specialist medical
and training services for people with severe mental health problems.

My understanding of NHS Trusts is that they are stand alone, self managing bodies, who carry out care on behalf of the NHS and are directly accountable to the NHS. (In business this is called outsourcing, paying someone to do the job for you, and my experience of outsourcing is a messy one).

Please correct me if I have misunderstood.

The more research I do, the more confused I become. I am an intelligent person, ok, sometimes I have difficulty understanding complex ideas. But when I can see the whole picture, the separate parts to the structure if you like, and how they work together, I gain an understanding and everything falls in to place,

Not to get distracted, my aim today was to try to find out how we, the end users of the NHS, can get directly involved in decision-making.

There appear to be many ways of having your opinion heard.  Details can be found on our “How to get involved” page

A new way I have found of getting involved on a higher level is:

Clinical Senates

Clinical Senates have been established to be a source of independent, strategic advice and guidance to commissioners and other stakeholders to assist them to make the best decisions about healthcare for the populations they represent.They are comprised of a core Clinical Senate Council and a wider Clinical Senate Assembly or Forum.

The Clinical Senate Assembly or Forum is a diverse multi-professional forum providing the Council with ready access to experts from a broad range of health and care professions. Membership of the Assembly or Forum will encompass the ‘birth to death’ spectrum of NHS care and will include patient representatives.

The Clinical Senate Council is a small multi-professional steering group. This group co-ordinates and manages the Senate’s business. It will maintain a strategic overview across their region and be responsible for the formulation and provision of advice working with the broader Senate Assembly or Forum.

There are 12 Clinical Senates across England:

Clinical Senates, Get Involved






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