The GP surgery is the same that Elizabeth has been under since she was born.
The GP surgery is divided into two. Front entrance is for covid vaccinations, very busy with people queuing and the back, for appointments and reception. All appointments have to be made on line or by telephone. It is not always possible to access internet or even get to speak to a GP when you call. I was told last week I should call at 8.00 am as I was too late for an appointment by midday but I was impressed with the receptionist I chatted to who seemed to understand fully Power of Attorney, unlike so many professionals including doctors. In terms of communication when I explained I often felt ignored, disregarded and treated like I was invisible by the surgery it was nice to hear that it was wrong to dismiss POA for Health and Welfare especially when Elizabeth needed help not only to make appointments but to attend them as she has come out from a year’s incarceration under MH more disabled than ever.
Today I phoned the GP surgery at 8.00 am and was No. 25 in the queue. I waited patiently for a long time until finally I spoke to a receptionist. I requested a telephone appointment with Elizabeth’s Doctor and gave my mobile number. I was told it would not be possible to speak to Elizabeth’s doctor as she was fully booked but another doctor instead.
After this, I tried to enquire about Elizabeth’s benefits and spent more time on the phone to DWP. Absolutely noone has tried to help with her benefits since PIP stops when someone goes into hospital but Elizabeth was discharged on 28 May and not so long ago her entire benefits stopped due to error by someone under DWP. Good job I noticed and thankfully Power of Attorney over finances was not dismissed like the one for Healthcare with the excuse that this is only effective when no capacity and thankfully I was able to deal with matters. To think that Elizabeth once was working. Had she been given the right kind of support instead of mountains of mind altering drugs she might not be in this position to this day.
It just so happens that it is has been recorded in the GP’s records about loss of capacity as the surgery obtained advice from an organisation called MDDUS regarding what to write in a letter excusing non release of medical records on the basis that Elizabeth had no capacity – I could not believe it when I saw this in the files however this would mean for sure that the surgery should deal with me as POA, especially since it was Elizabeth’s request under GDPR Rules to have sight of her medical files which are still awaited. It makes you wonder what there is to hide in such files, especially when I have read the discharge notice and other disturbing things.
The hospital discharge notice is not signed by the Responsible Clinician from Suffolk Ward Dr HM but upon enquiries today I have found out this has been produced by a doctor (Dr BA) from the Home Treatment Team under Chase Farm Hospital Enfield. There is not one mention of mental health disorders. Schizophrenia is, for instance F20, but only physical health ICD10 is mentioned. I wanted clarification from the GP as to what was the real diagnosis for Elizabeth and so did she. I also wanted to speak to the Practice Manager who has not phoned me back on two occasions.
Anyway, getting back to the GP, I had noticed a text message on my phone stating that she had phoned Elizabeth. I specifically wanted to speak to the GP myself to clarify the above and to inform her of recent updates in terms of appointments that I had made but only thanks to Elizabeth informing me of text messages she had received herself. So from this, you can gather that Elizabeth does not mind sharing information with me and in fact found it far too stressful to deal with making the appointments herself holding on the phone for ages going through different options.
I then had to phone the GP surgery again and this time, I was this time No. 9 in the queue. Elizabeth had spent most of the day lying in bed exhausted. She is on a high dosage of Clopixol depot that just makes her so tired and incapable of doing anything much. I have never seen Elizabeth so drugged up and sedated and question how this could possibly be doing her any good. I was advised that the Consultant Psychiatrist would be taking her off the drug but here are the side effects of Clopixol Depot and there is no guarantee he will take her off it as it is subject to six weekly reviews apparently.
Here are the Clopixol Depot withdrawal symptoms:
Nausea, anorexia, diarrhoea, rhinorrhoea, sweating, myalgiass, paraesthesiass, insomnia, restlessness, anxiety and agitation. Rare side effects are slow heartbeat and abnormal ECG heart tracing. Life threatening irregular heart beats.
Elizabeth has already been recorded as being of “high risk of mortality and high risk of choking”. What kind of Dr puts someone who is a poor/non metaboliser on such a high dosage. 400mg is maximum and they have entirely ignored the fact that in the files it already states that there is an irregular heart beat and she is treatment resistant. There is definitely something wrong with her breathing. This probably all been covered up if she had been sent away to the Priory for another six months. Thankfully, Mencap, NAS and Access put a stop to this but where are the CTR minutes? That is a very good question after all this time they are nowhere to be seen. I wish I had taken the minutes instead as these would have been immediately ready.
After I finally got through to the receptionist I explained that I was not at all happy as I had spent so much time on the phone this morning out of concern for Elizabeth’s wellbeing. Elizabeth’s phone was practically dead but I got to hear that the GP had phoned Elizabeth excluding me, when I needed to speak to her myself. I then finally received a call from the GP but only after I had made a fuss about this. The GP insisted she speak to Elizabeth first to ask if it was OK to talk to me. I found this astonishing as I am the one who needs to know about appointments in order to be able to take her to them as Elizabeth can barely walk. So I explained I had Power of Attorney and was told that this did not count because every time the GP would need to gain Elizabeth’s permission before speaking to me, despite the advice from MDDUS to say she had no capacity. Elizabeth gave her permission to the GP to speak to me and then the GP spoke to me briefly and I told her that I was concerned about Elizabeth’s breathing and what was written on the Discharge Notice. The GP was dismissive about the diagnostic findings written on the discharge notice ie “abnormal findings on diagnostic imaging of central nervous system”. This was trivualised by her stating this was entered by a administration staff in other words, hence of no consequence. The GP further tried to reassure that she had checked with Dr HM (RC) of Suffolk Ward. I then went on to say that this discharge notice had a doctor’s name (Dr BA from the Home Treatment Team) on it as well as the care coordinator from Enfield Community Rehab Team (PM). Under Allergy – absolutely nothing written. Under Carer’s contact (unavailable Data). The abnormal findings on diagnostic imaging is not just mentioned once but twice. There is absolutely nothing under mental health re ICD10 codes and that is because under the DSM, primary care diagnoses come first. When I checked with Elizabeth she did remember having a scan so such comments should never be dismissed in my opinion. Elizabeth was discharged to her independent flat on 28 May and referred to Enfield Crisis Resolution and Home Treatment Team so how comes this discharge note was prepared by Dr BA of the Home Treatment Team when Dr HM was the Responsible Clinician from Suffolk Ward and I had requested the discharge note many times. The discharge note was dated 05 June but the referral date is noted to be 24 May 2021.
It is stated “future management by GP and Enfield Community Rehab Team” but surely this should only be the GP because no mental health diagnosis is mentioned on the discharge notice so what is Elizabeth doing under a MH team?
I spoke to the GP about my concerns that I was not informed about the most recent referrals for ECGs and blood test. If it was not for Elizabeth I would not have been informed at all and been able to make the appointments. To top it all , Elizabeth received two calls from Enfield Community Rehab team about another appointment which I would not have known about otherwise. Sometimes Elizabeth forgets to tell me immediately when this could have all been arranged sooner.
Because Elizabeth is disabled and unable to communicate effectively over the phone – for instance she gave up when she tried to make an appointment herself and became stressed out by the lengthy wait and she would also would need taking to such appointments. It is a great pity that there is not better communication. Her care coordinator has commented on Elizabeth’s breathing and we have all noticed there is something very wrong but this is not surprising when certain doctors have not shown any regard for her physical health or the fact she cannot metabolise the drugs according to the P450 liver enzyme tests and they have prescribed at maximum levels – it is no wonder therefore Elizabeth’s physical health has been damaged and she has suffered injury.
I was not in the slightest bit reassured by the GP trying to brush aside the comments on the discharge note as though they were of no significance. On the contrary, when files are refused under GDPR Rules, it makes me all the more curious to know exactly what is meant by “abnormal findings on diagnostic imaging of central nervous system”.
The appointments for ECG have been made and diarised plus the blood test but this seems to be a duplicate. Elizabeth was prescribed Folate Acid but this made her very ill but what about B12. The other blood test is for Folate Acid and B12 but B12 has not even been prescribed.
The GP wanted to speak to Elizabeth and asked how she felt to which she replied “not good”. The GP discussed about weight gain. Again I pointed out that this was due to the drugs prescribed as well as underlying physical conditions such as PCOS and it could even be thyroid.
I mentioned that Elizabeth had to frequently rest during the day and had no energy whatsoever. I questioned her current treatment to which she said she would speak to the MH team. I then said what is Elizabeth doing under a MH team when she has all physical health conditions? When someone has a neurological condition they should not come under a MH team and I had written to JR, Commissioner of North Central London CCG because I thought Elizabeth should be under “Headways” who are brain injury specialists. The GP said she was referring Elizabeth to a Neurologist. The last time Elizabeth saw a Neurologist was back in 2014 when he saw signs of TD (tardive dyskinesia) and commented she would be better off all psychiatric drugs altogether. He mentioned about a referral to a geneticist and so I mentioned about a referral to Dr Hakin, not only a Geneticist but Rheumatologist and this would be appropriate because Elizabeth has complained of chronic pain and this could be rheumatoid arthritis. Whilst I am not a doctor I am a witness to Elizabeth’s pain discomfort which has been ongoing for far too long without investigation.
Elizabeth was also a frequent visitor to the GP and calling ambulances and Police because she was suffering from chronic pain but nothing was done about it up until now that I have obtained the most disturbing current files and read the discharge notice.
As I am writing more drama which I could well do without. I have had to shout out of the window and run downstairs to confront thieves trying to steal the catalytic converter of my BMW car. Unfortunately, I was too late to confront them and I have just had a visit from Police to whom I reported that there had been a spate of such thefts along my road. I only wish I had got outside sooner but I did get a good look at one of the men concerned who was not wearing any face covering I could most probably identify him and hopefully one of my neighbours had captured some footage on his CCTV.
I have spent the day helping Elizabeth in the flat and most of the day on the phone. The benefit system is at breaking point. For instance, once paperwork has been received, the DWP refer things to a private company for assessment. I telephoned this private company and they have a backlog going back to February would you believe. I mentioned my concerns regarding a telephone assessment because Elizabeth, who has autism, is unable to communicate well in phone calls but was told that not all cases were referred to see an assessor so we will have to wait and see.
Elizabeth has phoned me many times this evening out of concern when she heard about my car. Quite often she will show concern for the wellbeing of others and especially animals.
I have enjoyed listening into a zoom meeting by “Stronger Together” and there were some very inspiring carers and people of experience speaking. Unfortunately I could not listen in all day and hope that I can do so at a later stage as it was all being recorded. I am going to ask as I would like to share this if this is at all possible. I know that Elizabeth would have benefitted by listening in to some of the wonderful speakers.