Underhand tactics!

 

We have been currently trying to sell our house through a fine and reputable specialist estate agent the deals with arts and crafts houses that were built in a particular period including art deco. However, we have been plagued by one particularly nasty estate agent who dared to send us letters in the form of to the legal occupier now this is disgusting and shows no regard for individual people or people that are in the process of selling houses.

 

What is worse is that yesterday I received a friend request through Facebook now I thought it was a genuine request in the way it was worded like it was somebody whom I'd never heard of from school, but of course, I went along with it not knowing what the nasty surprise would be at the end of it. What you was what's an underhand unprofessional way of trying to make us switch to the estate agent and it was deplorable like we had to entertain them I may have to drink our coffee. Of course, there may be those of you out there who think this is perfectly fine, but to me it's disgusting. I did make an official complaint direct to this estate agent in question I subsequently blocked them from making all contact with me through Facebook including the messenger service and also any phone calls they suggested they would give me.

 

This individual then decided he would use Facebook Messenger through the contact of one of my friends with whom I discover this individual is friends. He responded that he wanted to make sure that he hadn't offended us and hoped that we were not annoyed. He is not a lovely guy he's a pain in the neck.

 

This individual in question has offended both me and my brother and has been incredibly despicable by using underhand techniques by using Facebook Messenger to worm his way into my confidence and this is an insult to the office and position that he holds if I was in that position of his employer I would sack him on the spot, yes we are both furious at the disgusting why is this state agent goes on, I'm Gina I was so cross but there was only one way to describe that organisation days reputable attitude goes before them I down a river.

 

Now if this isn't a form of gaslighting from the estate agents, arrival estate agents and not ours what on earth is going on!

 

I of course await your comments!

A tale of Mental Torture & Persecution

 

From May to July 2022, I have had a terrible time it started when I asked to see a doctor about my asthma, but he said he had lost the last discharge letters from the hospital. The GP would not listen and practically called me a liar about the asthma and the cellulitis.

 

You would think that whether the person is a locum or a standard GP that he would have my notes in front of him or at least up to date as he would have seen that I have Autism and PTSD with complex trauma and therefore of acted as within the guidelines of how to treat people with Autism and PTSD with complex trauma.

 

Instead, he was incredibly rude and started to shout at me, by this time I was a nervous wreck, I left that shouting well that was a waste a time. I complained about him in great length about his attitude, rudeness and the lack of preparation. The response I got was absolutely disgusting and no reasonable adjustments to be considered and I was satisfied with the level of service I could fuck off.

 

I have not fucked off either, because I have stood my ground and since this I referred this to the patients association, who asked me to ask them about the reasonable adjustments policy, but all I seem to be getting back from the doctors is that know all about PTSD, not good enough, so they don’t have any qualifications in autism and C/PTSD.

 

I had to keep telling them about it stating that I did not chose to be physically and sexually abuse and being born with autism.

 

Then I had to keep chasing them about my referral to the Maudsley and getting excuses, then it gone through without funding as I found out later both sides had been messing me about. I have now subsequently cancelled this and then this silly and pathetic practice manager referred me to the social prescriber. Right, I am going to take this back, she has gone too far!

 

This is what I said” I see you have referred me to Social Prescribing without telling me, this is wrong, let me tell you I am busy when not dealing with you running a charity for people with Hypermobility, dealing with Autism Buddies U.K., Coproducing with Curators of Change, including Mental Health ADASS EAST, Coproduction U.K. independent mental health network.

 

I suggest you stop the referral as I have already made a complaint about the mental trauma you are putting me through as you have no idea about reasonable adjustments, please just do what I ask you. You have no knowledge about autism and PTSD and the trauma you are causing, if you would just ask me what you can do to help, instead I get a hissy fit from you that you can't help and by referral to social prescribing is a way of making things better - how dare you! Any way the result of this what that I got the referral cancelled.

 

Still no reasonable adjustments, originally when this all started from the first initial complaint, I was asked about what the practice manager could do so the both of us me and my PA/ brother came up with this and approached the practice and asked then do consider these points.

 

You asked me to clarify which aspects of dealing with Caradoc Surgery are traumatic for me.  I have taken some time to reflect on this, as the whole patient experience is full of PTSD triggers for me.

 

1.      Phoning the surgery to request a triage appointment: I find telephone conversations stressful, even at the best of times.  With the added pressure of needing to communicate something important, and the tension of waiting in a telephone queue, I become tongue-tied and have difficulty in expressing what I need to say.

2.      Waiting for a call back, with no certainty as to when this will happen: this is another PTSD trigger, resulting in high levels of anxiety which prevent me from focusing my attention on other things that I need to be doing that day.

3.      Telephone consultation with a doctor: similar issues as with (1) above.

4.      Face-to-face consultations with a doctor: when these take place in a small room, they trigger my PTSD because of their similarity to the traumatic events which are the root cause of my PTSD.

 

In a previous email I asked about the possibility of reasonable adjustments under the Equality Act.  Having given this a great deal of thought, I think the following could be feasible:

 

·        Provide me with a non voice-based means of making contact to request a triage appointment (and a fall-back in case the primary non voice-based method is not functioning).

·        Give me a guaranteed call back time.

·        When I need to have a face-to-face consultation, allow me to see the room in advance so that I know what to expect (this could be via a pre-recorded video) and ensure the room is of sufficient size so that I can bring a relative or other person with me to the consultation without feeling cramped.

·        Use video rather than telephone calls for remote consultations.

·        Give me double appointments by default, so that I have sufficient time to express my concerns.

·        Ensure that I always see a female doctor (as already requested.)

·        Check with me how I wish to be described and not make assumptions.  (For instance, I find the word ‘homosexual’ offensive and prefer to be described as ‘gay’ if reference ever needs to be made to my sexuality.)

 

 

This was the response: -

 

I have taken some time to reflect on this, as the whole patient experience is full of PTSD triggers for me.

 

1   Phoning the surgery to request a triage appointment: I find telephone    conversations stressful, even at the best of times.  With the added pressure of needing to communicate something important, and the tension of waiting in a telephone queue, I become tongue-tied and have difficulty in expressing what I need to say. I notice you have access to online services – I believe we have previously confirmed that from 12pm – 10am daily, online triage appointments can be booked via the NHS App. If you were to do this, please note you may not get a call at the time you book, the call could be anytime during the day. However, please refer to  option 3.

2        Waiting for a call back, with no certainty as to when this will happen: this is another PTSD trigger, resulting in high levels of anxiety which prevent me from focusing my attention on other things that I need to be doing that day. Unfortunately, this is the practice system and we am unable to accommodate a specific time. This is due to the clinician dealing with telephone calls and face to face appointments which can sometimes run over.

3        Telephone consultation with a doctor: similar issues as with (1) above. As requested below, I am happy to confirm that in your circumstances we can arrange for your consultations to be conducted via video consultation.

4        Face-to-face consultations with a doctor: when these take place in a small room, they trigger my PTSD because of their similarity to the traumatic events which are the root cause of my PTSD. All consultations can be done via video call which should I would hope should alleviate and triggers for your PTSD.

 

 

In a previous email I asked about the possibility of reasonable adjustments under the Equality Act.  Having given this a great deal of thought, I think the following could be feasible:

 

·        Provide me with a non voice-based means of making contact to request a triage appointment (and a fall-back in case the primary non voice-based method is not functioning). Please see point 1

·        Give me a guaranteed call back time. Please see point 2.

·        When I need to have a face-to-face consultation, allow me to see the room in advance so that I know what to expect (this could be via a pre-recorded video) and ensure the room is of sufficient size so that I can bring a relative or other person with me to the consultation without feeling cramped. Im afraid this request is not possible but I can assure you that you will be seen in an appropriate consultation room which will have adequate space.

·        Use video rather than telephone calls for remote consultations. Yes, this is something that I can arrange as stated in point 3 and 4. Please can I suggest that when you make your appointment, please advise that I have authorised you for a video consultation.

·        Give me double appointments by default, so that I have sufficient time to express my concerns. Yes, I can authorise this, when you book, please ensure you tell us that you require a double video consultation to ensure that you are allocated the correct amount of time.

·        Ensure that I always see a female doctor (as already requested.) Yes – a note of this is on the main screen of your record, however there may be days when a female is not available, and it would be up to yourself if you are able to wait for another day.

·        Check with me how I wish to be described and not make assumptions.  (For instance, I find the word ‘homosexual’ offensive and prefer to be described as ‘gay’ if reference ever needs to be made to my sexuality.) Homosexual is the only term within the system that can be added to your record, however, I will remove that term and manually add on your home screen you would like to be referred to as gay.

 

 

I feel sort of vindicated but not really because these are only partial reasonable adjustments and I note that they recorded this on my notes as a psychological event what does this mean?

 

You can see that there has been a lot of going back and forth but I do not stand still, because is my mental health that is at the fore front, but this also show a GP’s practice who really does not care about patients with mental health issues.

Mental Health in Primary Care

 Primary care is the first point of contact you would normally attempt to make use off instead within the community at large, this means the doctors and community nursing settings incorporating community care in a local cottage hospital type service, however this is not available in all areas of the community. 

I feel the need to blog about this topic as I someone who is affected with mental health/illness issues, and they are Complex PTSD and Autism and the main issue with the primary care settings are that not just in North-East Essex where there seems to be a lack of awareness or the support of an appropriate support staff member around. 

What is going on in our community settings seems to be either a root and branch slaughter of cost cutting of services at the expense of people in the community who need these services.

Should you happen to have mental health issues such as the ones I have identified with the doctors can be very apprehensive and frightening places,  and despite the breathing exercises which take the edge off, however you would like to know that there is a mental health nurse advisor around that you could at least talk to calm your nerves, or to at least to talk through some reasonable adjustments that would help benefit your own set of concerns or issues. 

However, we know that unfortunately this is not the case and from speaking to a specialist who I see for my EDS that they are finding they are not being treated as they wish to be treated. 

What we are asking for is reasonable adjustments in line with the equality act. 

By this we mean allowing people to view a room before they use it, making sure they are near a door and exit, not using a small room if this may start triggers off in individuals, allow individuals to talk to a mental health nurse before there appointment to tell them what their needs are or suggest a time when the surgery or place in the community is quiet and working with people to achieve better outcomes with the individual.  

In the end the choice is yours either end up in trouble over the equality act or work with us and do not tell us to leave because you do not want to change your attitude is not the best way to getting the right outcome. 

Living with Complex PTSD

 

Living with Complex PTSD

 

If you have read some of my previous blogs by now you will get a theme or flavour on how I write and how I share my feelings on various points of view, now this one follows on or could follow on from respecting my mental health, but of course, this is up to you or you may be coming to this new as you are interested in what I have to say, this is up to you.

Here goes... I have Complex PTSD because when I survived my school life, I say survived it because it was hell, especially the secondary school part of it because I went to the boarding school of hell because when I entered that place for the first day of my academic life I was physically bullied, not just the name-calling but being physically kicked, punched, spat at, etc. I wanted to run away but I could not because I had Autism which made me freeze to the spot, which I gather now is a type of reaction that the human body takes over which is a defence strategy to overcome stress and anxiety.

It made no difference if I tried to report this action which a person had violated against me because it seemed like everyone was against me whatever route I took and even my horrid tutor was also my science teacher made my life unbearable and even encouraged the bullying, or having meltdowns, they even accused me of being my own worst enemy. Later when I was 12, I had my first sexual encounter and I was abused I am not going into the details because it is revolting, and I had to endure this every term I was there and right up until I was 16 nice especially when you are trying hard to study for your CSE’s and the staff were useless and ignored this behaviour.

To cut a long account short I later found out that this type of behaviour and actions is what is now known as Complex PTSD, now you have some of the backgrounds to why I have it, it helps you find out why I behave in certain ways which unfortunately I cannot control, some psychiatrists and doctors would want to put me on medication, however, I cannot take medication because this has nasty side effects and possibly it reacts with other medication that I take for my other complex conditions. The school of thought now is to take the other approach such as CBT, or other therapies, which could be music therapy and art therapy, which are just as effective as taking medication.

Talking therapies do sometimes tire you out, but at least you can get over them quickly and sleep them off when you have finished your therapy whereas this is not the same as taking drugs.

My experience with psychologists has not been a good one as not all of them are the same, my nightmare journey was with a mental health trust, which employs people who just cannot speak English and who are not qualified to cope with people who have complex trauma or people with my condition, and have no idea what they are dealing with such as suggesting that you go to a secret place and that you have a box for hiding things in, but is this appropriate for someone who has complex PTSD and what I have been through I don’t think so and I had to go through endless drivel for this every time and worksheets of blame which was doing nothing to address the underlying problem and after several months of this I discharged myself.

I then decided to refer myself to CARA which is a charity dedicated to helping people like myself overcome historical and current child sexual abuse, which in my case I am finding more helpful and to the point and by someone who has also been through it. We do not use the concept of the box to hide things in as we want to expose what has gone in there to try and get things out as this does not help us, for example, I hate small and confined rooms as I find it very apprehensive and frightening, my brain will shut down and I will tend to focus on the one important thing to keep myself going and to keep myself safe.

Coping with the apprehension of it all is itself dreadful, let me explain my body will tremble, but most of all my thighs and it is not like a restless leg, it is so bad that my hands can go to the point that people think you have Parkinson’s (I don’t, I have essential tremor) it’s like your fitting, so the only way to control this is to do box breathing or imagine blowing out the candles on a cake, so we hold up our hand and as we blow we put down a finger to represent the candle to cope with the stressful situation that we are about to face or I might use humour as people do in a hospital to cope with the stress and this is where people have got it wrong, people on the outside, think it helps!

Another problem I have is mindfulness or the body wave (the standard process that people use) I can’t do it as it reminds me too much of pain in my body and is painful because it reminds me of being sexually abused and raped, so this is why I will walk away or turn my camera off and the sound off. There is an alternative that I would encourage people to use to be aware of people who have problems both physically and mentally and this is one whereby we focus on nature and we talk about the curvature of leaves, the freshness of the grass that has been cut, take a deep breath and feel the taste of nature, perhaps some back round music or even birdsong,

 

What helps me when I have a stressful moment is now to listen to jazz fusion up-tempo music as it helps my mind calm down not easy when you have been raped and sexually abused. The other problem I have is my subconscious is all over the place when I go to sleep so I might dream about a WhatsApp message or text and believe it is real and literally and they can be distressing, and some have been horrible when they are about your close work colleagues and or friends. When they first started to happen which was about two years ago I would wake up and look at my phone and believe that they were there and I was so relieved that they weren’t but this kept happening for weeks and months before they settled down.

I do suffer from deep sexual dreams that are horrid, to the point that everything around me goes dark around me and closes in like a box about to collapse, I can tell the difference from a gay dream to a dark disgusting rape dream as this is my subconscious playing up, but now if I get the text dream, I have created my way of telling myself it is rubbish. Under a previous regime, I was told to wake myself up and go for a walk and then chuck some water in my face and then go back to sleep, but this is not advised as to why would you break your sleep as it can be more difficult to get back to sleep!

I have recently found out that some the Complex PTSD has elements of Autism, but I already have that as a separate condition, so I get a double whammy, oh dear another brick wall moment I stand /sit here, and do I take it, no I have to develop strategies to try and overcome the issues I have.

I do not take medication as it causes problems so I instead look to other ways of dealing with it, I write and blog posts, I also paint and have taken to working with wax (encaustic art) I am a very visual person and a creative as this helps me deal with some of the problems however I still need a lot of support trying to cope with this mental illness and live an everyday existence.

There are people out there who have been helpful to me and they know who they are and some of them I have spent a lot of time talking to, they know I need a lot more help in social care, but I currently live in North East Essex and social care is becoming a joke, not to laugh at, but to show how bad it is a system whereby I am trapped, yes I am hoping to move to Greater London to get out this trap, and hopefully get more help.

If you want me to talk about mental health/ illness and how it affects me be this at a coproduction meeting as this is the way I work best and through Personalisation or around a table, get in touch with me at, remember the Tea & Coffee and chocolate biscuits!

@autismbuddies12

autismbuddies@outlook.com

 

Social Care or Social Neglect

 

With failings currently across the system of social care, what do we attach to some authorities in the land will of cause blame Covid, but in some cases this might be true, however, we know that all this did was show and even exacerbate what was already there.

 

In my research and understanding of the facts, I am now given to believe that there are some departments within social services that have shed quite some social workers because of cost-cutting, and possibly they were taken into the fold because of the rise of covid or was it because they claim they simply just could not cope with the amount of workload, something I find hard to believe because they could have made it easier upon themselves by the intervention of technology for meeting with individuals. I with my PA underwent this from a social worker we recommended it and it was taken up by the said local authority, and possibly in fact this is something they may wish to continue to use in the future as it means they can work directly within their own office meaning that they can see more people and cut down on traveling and meaning that they become more effective and efficient.

 

However, what we are seeing is social neglect and bad attitude from social care, and trying to get information from social care is like wading through thick treacle and hitting the eternal brick wall or if you get an answer it is often patronizing and not very helpful information and then you start to question your sanity.

 

Should you receive a direct payment or personal budget which by the way there is nothing personal about it then you are subjected to being treated like a fraudulent person and you have to submit three months of invoices and or timesheets depending on how you employ your care staff and if a penny is out of place they castigate you forever and make your life hell and put you into there own traffic light system, or the black list as this person can’t be trusted. Because of one mistake they try and make you attend a workshop which you are not obliged to attend on money management it is wrong and offensive.

 

I know of some disabled people who are put into a role of responsibilities which often puts them into a fear and dread position when trying to recruit appropriate care staff and just try and recruit them for such low rates of pay. This is however dependent on the rate that your local authority pays you and I have for many years had blazing rows with local authorities and why do pay at such a low rate and yet care agencies get almost double, and their response is because they have more responsibilities, yes and we don’t utter rubbish and balderdash!

 

Oh, its to do with recruitment or some like that and their other costs. We know there is no support package given for us to tap into recruitment agencies so that we can get the right staff and this is the same if you are under continuing healthcare or a mix of both from the local authority. The insurance can be exorbitant and when things go wrong we are to blame for the mistakes, so technically the local authority is at blame as they are the in-between organization who treats us with disgust. I know for one as someone with autism and I would find it very difficult to find the right staff if I did not have friends or family and had a special arrangement with the local authority, but for how much longer. The problem is the rate of pay and they simply have no idea what that level of responsibility is when someone has complex needs and complex at the physical end as well and major difficulties that no one can be bothered to take note off.

 

For people who pay interest in what I write, right I have Ehlers Danlos-Syndrome which is a connective tissue disorder but causes major issues, so if I am hit with an asthma attack a chest infection, and or cellulitis it weakens me and so my mobility is shot to pieces, it also messes with me psychologically because I also have Autism and Complex PTSD or Complex Trauma, but I do not get a big package of care and support and I get very little for the autism and nothing for mental health support.

 

Then we also find out that there is a lack of coproduction in the local authority because when a commissioner gets the flu or jumps ship to take up a promotional role in another local authority and they do not replace them with a person to take over and promote coproduction no they replace it with citizens panels. Or is within this local authority or London borough they call it coproduction but replace it with consultation exercises which are not very helpful then they get some big shot person in who then decides behind the people who are recipients of the care they get to do wholesale cuts across the services which have dire consequences for the individuals and or they to refer them directly to continuing healthcare who can only cover some of the costs and then we get this ping pong effect between health and social care and who loses, in the end, the recipient of the care package and this then is social neglect.

Mental health deserves respect!

 

Last week 7^th May was  going to be a day of hell for me, why because I was expecting a call from I thought finally an Asthma nurse, possibly prompted by a spell in hospital as a result of a combined Asthma attack and combined chest infection, not nice when you're struggling to throw up and then get your breath and your fitting, etc

 

To cut a long story short so I got not a qualified Asthma nurse, but an advanced Paramedic who because she had personal experience of asthma this condition thought that she had the experience as a qualified medic to deal with my review, sorry she had no idea and referred me to a doctor. This is where the nightmare begins.

 

On the 8^th of May, I went over to the doctor and I was apprehensive enough because I also have Complex PTSD and it scares the shit out of me when I have to see someone I am not sure of, anyway I got in to see him and we went through the usual load of claptrap and general lack of respect towards me as he was awful no respect towards me because of my Autism and my Complex PTSD and when I mentioned I have Ehlers Danlos Syndrome he looked at me as if I had two heads. He then questioned my diagnosis of Asthma and this nearly erupted into a row, sorry but not all people fit the classic signs of Asthma. I felt so raw when I came out of the surgery that I feel that it has left me lacking in confidence in my doctor's surgery, that I am using alternative and complementary therapies to help with a complex situation, and I am not going back until the matter has been dealt with.

 

The problem I and most people have is that of trust, it stems from people in authority this could be people like Police, Teachers, Parents, Doctors, Consultants, Nurses, and more, and unfortunately, if you have been through physical and sexual abuse you find it more and more difficult to deal with these people.

 

The other issue is that I want my medical notes flagged for being Autistic and having Complex PTSD as going into any medical place is a real problem for me and why should we have to do this because there is a genuine lack of respect and this goes both ways if they want us to respect them then they should respect us.

 

I also came out last year as a Gay man and I am proud of that and so I had this changed on my medical records so they could tick their diversity box, shame they couldn’t tick their equality box, my advice now is to write down how you wanted to be treated and hand this into each GP you have to see or consultant and it’s a sort of passport because I have had enough of being treated like an idiot.

Coproduction: further hinderances

 

There are major issues with social services as they are working in silo’s or different quadrants within so  called large counties, which in turn causes problems for people with complex issues, for example you could have someone with autism who needs the help of an autism specialist but what good is this if they are based in the south of the said county and you are in the North.

 

The other issue is that there was a time when social services worked together as one whole team serving the needs of their recipients including mental health and instead this is farmed off to another service provider who clearly has no idea about the needs of people with complex mental health needs, because they are only providing that service for what they bid for and if you have say Complex PTSD or Complex Trauma they have no knowledge of this and may signpost you back to a service that is totally inappropriate.

 

There is a general lack of integration with mental health not just at the local level but at the regional level and unfortunately I keep reading reports or hearing people in authority stating that we are going backwards what a surprise and we have excuses that are blamed on covid and this is all due to shortages in staff which is no surprise at all.

 

Then there are problems with commissioning by putting inexperienced staff in at the deep end and this causes major problems as they are new in an area of work that they find they do not have specialist knowledge even by gathering the worst-case studies to seek out contenders for the latest stream of service provision. Should the person make light of this then they are bullied or intimidated by another from another area and this makes them feel even worse and this is not the way to go one either and in the end the people that you are trying to help suffer in the end by not having the appropriate level of care and support.

 

We are also told of social workers put in a difficult position about just how truthful they are with a potential recipient(s) concerning the numbers of hours they are actually going to get, but the hours promised to the point that the social worker ends up having to taking time off due to the stress and being put in an awkward situation about being over economical with the truth.

 

Attitude and language can also plays a role in how this affects the individual and how we feel that they are towards us and there are many different words we could bring up, but one or two come to mind such as being stonewalled, which is becoming the norm with people who are in receipt of care and support to the point that people are becoming evasive and deliberately going out of their way to avoid answering questions or providing correct information. The other that comes to mind is being gaslighted which means to manipulate (someone) by psychological means into doubting their own sanity. Unfortunately, this is happening at both levels including social workers and the recipients and if you ask any awkward questions this is what happens to you.

 

Coproduction is seen as a joke at my local authority and replacing it with citizens panels these achieve nothing and are only one sided and undermine everything that has gone before, and all the challenging work kicked away like dust on the pavement, which means nothing has changed.

 

The answer is to do away with silos as they do not work and challenge everything at a local level and start getting on with it, getting social workers on side, but getting the backroom staff of their backsides and actually seeing what it is like on the ground rather than just taking things for granted, but the answer is to get rid of those who do not like change and who will not change.

 

Instead, we should work to achieve a coproduction of rights to decide what we want to change and what MUST change for the better and how we can hold councils and local authorities to account for what they are doing and no excuses. The problem with regional constructs is they do not get down to the people at the local level and where we have silos the information is lost, or managers seem to sit on that information, and it is either binned or not followed through.