Friday’s Fall

I woke up last Friday morning feeling very weak . My head was all over the place and I was struggling to decide what to eat for breakfast. I was actually overtired, agitated and it had been an up-and-down week. I was due to see the district nurse to redress my diabetes foot ulcer and a small wound on my toe, my GP was coming a bit later with the palliative care consultant to put together a care plan and later in the afternoon I had a research trial management group phone meeting which I was really looking forward to.

The district nurse came but she was on her own v new and I normally get 2 nurses and one helps the other or a healthcare assistant helps . However this particular nurse wasn’t confident on a previous visit and made mistakes so I had to ask her to leave because I wasn’t able to look at what she was doing and teach her what to do at the same time I was very agitated as she walked through my door.

I went to have a rest and whilst waiting for my GP and consultant my head is flying all over the place . Ironically a week before seeing the bariatric medicine consultant and the lovely dietician that the transport issue at UCLH is too much for me they sent the wrong crew all the wrong vehicle and then I’ll wait three hours to get home stuck in my wheelchair and it takes me a week to recover.

Completely with pain exhaustion overwhelming me and I was trying to get the energy of this important lunchtime appointment. The fact that I skipped an important dressing change and a high risk was too much to even think about.

I got up to go to the toilet are use a bariatric walking frame and I have a jack and Jill style bathroom so I can go straight in from the bedroom to the toilet. I sit down and my legs feel so weak. On my right foot I have the toe amputation on my left foot and A Long-term ulcer I’ve had for seven years. The blue line bandage can slip .

The doorbell went. I got up from the toilet I left foot slipped gave way and I went flying into the shower landed on the floor. My GP rang 999 we decided not to tell them I have oxygen to try and speed up how long will they take to come. Meanwhile the consultant got my duvet and pillows and got me comfortable and I had to have some glucose as I pre bolussed for lunch but had no lunch.

I haven’t had a fall for about six months and definitely not concrete for a long time.

So Dr X sat on my loo and said ‘ it’s been a while since I saw you . I think your battery is running on empty .’ She agrees when I say how I meet certain EOLC criteria and I have sarcopenia however this isn’t discussed in those patients who are under 65 ….. I tell her I read all Geri soc tweets and slides thinking….

I cried . She told me how the hospice team can support me , counselling , physio & OT assessment to check out my needs ……. my clinical issues discussed . If I get pneumonia I have said I don’t want hospital in any circumstances or picc lines . I want home treatment. I said it’s winter I’m aware my high risk time. She told me she agreed Hospital is not the place . No bariatric set up , no special diet I’m on , poor pain management ( neuropathy etc) as they don’t know me ( it’s not just about prescribing it’s furniture and support ) . Plus I’m more likely to die in hospital because of my own clinical situation . No she had no idea how long ……. I said I can’t do this …… so her response is very positive. She said that’s ok you’re feeling these things it’s normal in your situation. It could be a year it could be …… However let’s get you support to make the journey more comfortable. We have a whole team and we are here for you . Befrienders can come and sit with you and yes once you more confident on power chair let’s get you to our day centre with dial a ride .

She leaves with a joint plan . She’s honest too.

The paramedics come , 90 mins later just one crew not two they don’t have another crew to help ……get me up . I’m sore very sore . I refuse a/e as nothing broken . It’s again no bariatric set up and my local a/e is windowless and where I went with septic shock and lost my toe I’m too exhausted and in such pain to explain. I have a preferred a/e with good care plan fast tracking at the Whittington I feel safe there but I really have no need to go .

I refuse ECG they didn’t like that but there was absolutely no point I didn’t have chest pain tachycardia and it may have come out abnormal anyway because of my type to respiratory Failure . I just said no ……

They asked for a list of all the medication and I questioned the process when I’m not going to the hospital but they insist and take my bag I meant to write it all down all I want is my space back I want to cry under the duvet. They bothering me by doing their job. Just go just go …….. I’m exhausted my left leg that I used to get me up over the blow up thing they …. is agony as I have meniscus tear . I need a drink but then quickly realise I’ll need the toilet and too sore to get back ……. I skip the drink take extra pain relief and rest my head remembering the TMG in an hour ……

I needed normality ….. meanwhile the Ocado shop from earlier which hasn’t been out away in my kitchen two carers from here came but didn’t know me and couldn’t understand what I was asking whilst I was lying on the floor about frozen food going in the freezer and fresh food going in the fridge. I needed some drinks for the bedroom eventually a really good carer came later.

My breathing is still very heavy from the shock , my saturation levels are absolutely fine. I need to eat but I physically can’t eat so I shoving in a couple of glucose tabs have a banana and make the conference call. On mute out and listen and join in occasionally and I feel relieved and I’m thanked by the chief investigator for helping with a few things.

These are all part of my day stop however every single day there is something that raises my stress level to an exceptional level. I’m finding the phone calls I have to make about hospital transport, get anxious that the transport won’t mess up I have an important appointment this Wednesday to see a bariatric medicine consultant about supporting me , genetic testing and continuing work with the bariatric dietician. Juggling insulin & Victoza is hard really hard . I struggle to complete my food diary there’s too much going on but now the hospice will support me maybe my head will settle a little bit so I can focus on this important very important treatment. It’s really helping the Type II diabetes my blood glucose levels are better overall and I’m thankful I can use the libre sensor. I have an amazing dietician Adrian Brown his time is not commissioned so it’s good will through the R&D budget and I’m grateful to Prof Batterham for allowing this .

It’s a long day but finally I can eat and rest ……. the support from:Twitter was amazing and amazing mate Beth Kelly a DSN ( not mine) checked I was ok whilst on the floor and all over the weekend.

So changes ahead a new positive helpful team. No bariatric stigma . No battles . More ‘let’s see what we can do to help ‘

This is how all teams could work with palliative care patients, break down the attitude and work far more compassionately . That district nursing even without DN qualifications is of high calibre and compassionate. Nurses in these community wound care jobs being educated about diabetes neuropathy awareness of numbness and soreness . However coming into a palliative care patients home with confidence not fumbling over which dressing goes where and the patient has to repeatedly teach the nurse or the HCA teaches the RN! It’s a serious issue and it’s not being precious about one area it’s national in all areas of nursing due to cuts in service investment & training . I’m here right now needing good wound care nurses ……. a QN ? I’ll continue to wish that we had one……..

Meanwhile I discover on Saturday morning my shopping was defrosted and ruined it hadn’t been put away .

New week ……

I’ve got ideas we really need to talk about this – a fabulous bariatric physician to run a conference on palliative care and clinical needs. He says yes good idea ……The respiratory professor and consultant respiratory nurse have said yes we need to find sponsors and funders….

Just saw Partha’s tweet that UK T2DM HbA1c audit average is 7.5% . One thing I’ve got that’s hopeful – that was my last result.

---

https://www.gofundme.com/f/1u2fr1plyo?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=794c7af21fa64de5951f6be3aecd3ad1

My new go fund me page …… thank you very much if you can help …….xx

My Advanced Directive – the impact of complex obesity -a painful decision…..

Note : This is a very complex decision-making process including the complex physical health difficulties I have experienced as a result of lifelong obesity. If you are affected by this blog as a patient I would urge you to have a sensible discussion with the healthcare professional you trust rather than just Google information and sit with it on your own.

It started three weeks ago. I had moved into a beautiful flat it was supported living with independent living for all ranges of disabilities from dementia to MS and other complications including mental health difficulties. All the tenants have been specially selected on the basis of high social care needs within the complexity of health and social care working together. The move itself was traumatic I have been housebound for two years after a traumatic amputation. I was on a good Social care package and I was really lucky because I know so many people who have complex needs who struggle to get the funding they require. A very incredible doctor on Twitter Had the most horrific battle with funding for care services & continuing health care package for her very frail poorly mum . This I found distressing as we have a system Although severely underfunded it’s a system to protect the most vulnerable however what we have seen in reality is that only a very small proportion of those who need extremely important joined up health and social care get this funding. I have to mention it at the start of my blog as this particular harrowing experience for the family & loved one concerned .

So I moved in to the block of flats and the staff overall are wonderful. I have a full care package and have my own PAs for most of the time and then they do extra to fill-in for what I don’t have. The manager in charge of the PAs in the community is a manager here and her team have been wonderfully supportive as have the tenants. We have a wonderful lounge downstairs and various activity rooms and the building is beautiful. However for me there are complex issues. I have Type II respiratory failure and what this means in the winter as I’m extremely vulnerable and get repeated chest infections and my saturation levels drop to a very uncomfortable level. I cannot have oxygen and generally the treatment is all antibiotics and I have my chosen few with a wonderful head consultant microbiologist who went through so many with me over the years treating my diabetes foot ulcer and respiratory infections.

The worst part of it is my breathing as that goes so quickly and I walk with a heavy bariatric frame and can only do very short distances. Even in my own flat this becomes extremely difficult. Often it may be early pneumonia treatable at home , however I’ve had several very traumatic ITU admissions, treatment of sepsis which included intubation post emergency amputation. This was a very traumatic experience for my parents and myself as well as all those wonderful people came to sit with me. However routine accident and emergency care although a good plan was put in place and I’m fast tracked and medically accepted and don’t have to be in ambulatory care for hours . It works however the routine revolving door becomes engrained trauma . The complex nature of a obesity and no proper furniture & clinical set up system like having the right chairs & beds. The nastiness , ignorance and stigma of several respiratory teams along with the complexity of traumatic hospital transport services, porters shoving me around in wheelchairs rude impersonal and just feeling like I’m a big lump have no individual person to be and there is no actual long-term benefit of the revolving door.

Following ongoing for many years incredible discussion and education on Twitter around dementia care and frailty with end of life care I never considered and imagined that all that I learned and reflected on would be possible. I got from such high calibre, compassionate and amazing professionals as well as patients in medical and psychiatric social care services that one day all that along with my own complex life history would fit together like a jigsaw puzzle .

I met an amazing obesity , bariatric med & surgery , diabetes and psych as well as Geri & no real specialism left out , community on Twitter . I made a best friend a diabetes specialist nurse far away from me and we chat dating, kids , exchange diabetes chat , and laugh . I have others here too who support and befriend me and from other circles all walks of life . I supported a senior doctor as informal internet friendship with severe clinical depression intensive treatment . We both knew it was just informal nothing more nothing less but they valued and appreciated my kindness and notebook gift so much. This is just one example of the importance of reaching out and peer support. I have another friend and we send each other small gifts. She has complex mental health difficulties like me and we really get one another. I have lots of people I call friends on the diabetes community here .

So a couple of weeks ago I started to notice a deterioration in my breathing and my sat levels had dropped to 85-88 when normally my target is 88-92 . I was on the phone in the evening talking to my nurse friend and she noticed I have a very heavy breathing and said you need to call the doctor out and I promised I would in the morning. My doctor came out a new GP who was lovely and took my word on antibiotic protocol although had my previous GPs notes. She went away and I cried but she was lovely because she said look I’m not going to ask you to go and get investigated. However you do need to call the respiratory consultant nurse from the Brompton and check your BiPAP settings. I arrange this for the following day and the consultant nurse came and was lovely. We talked and I cried and she was supportive. The treatment started to kick in however I was very weak and frail and thought I was actually going to fall most parts of the day due to the fear of falling and struggling to breathe I could just about get to the toilet. I was convinced it was pneumonia my lungs are so painful struggling and bruised from the breathing however I’ve been through it so many times before I knew the drill. I cried and cried and I had to stop This. I should say I’m with the personality disorder service that is stretched severely as the lead nurse went off sick and then resigned and is not replaced and so now my care is severely affected. I haven’t had much emotional support since he left. I don’t know how long it will take them to replace him with the huge recruitment nursing crisis however the impact is massive and the support extremely limited. I have an outstanding psychiatric social worker of 20 years who worked with the team and I met her through the Jewish mental health Day service originally. She helped me get the flat and get things organised. She helps liaise with certain medical professionals. However it’s been a traumatic few months getting the flat move, dealing with certain debts And the complexity of my other obesity difficulties like appropriate furniture, good language, walking problems, dealing with amputation and a long-term permanent diabetic foot ulcer in another foot that is static but I have dormant osteomyelitis.

I woke up in the morning and during the night I emailed my professor at the Brompton and shared my thoughts about an advanced directive. As I live in supported living it’s a registered care home and so I have to have this in place if I don’t want emergency treatment. I got a lovely email back and she was just incredible saying it was a really good call and sensible decision and she would immediately write to My GP by email and in the post and she agreed with my wishes but the team would fully support me in any way they can. I cried and cried. I didn’t have anyone I could sit with who was really close. I rang my sister and she was really nasty bringing up all sorts of issues that she had no right to push for me in my vulnerable state. I rang my my GP and she agreed with my wishes but the team would fully support me in any way they can also I cried and cried I didn’t have anyone I could sit with who was really close. I want my sister and she was really nasty bringing up all sorts of issues that she had no right to push of me in my horrible state. I rang my GP and it was the Doctor Who hadn’t met me before who was the duty doctor and he was amazing and I cried on the phone and he said I think it’s so good you’re taking responsibility I don’t think I’d want picc lines , xrays , unnecessary-bloods and unhelpful treatments. I agree your ABGs abnormal anyway . We started to prepare The paperwork and as soon as they got the professors letter The doctor came round for three hours and went through everything. Then a manager sat with me and held my hand. I don’t know how I got through those four days. I then had to ring my dad just before the paperwork had been done to tell him and he was wonderful obviously upset but wonderful just wonderful and agreed my sister cannot tell me what to Insist I tell my brother who I’ve not seen for years and The relationship is non-existent. Is that it caused me such distress and added to my traumatic feelings. She kept saying what about mum and dad I said mum and dad are old now and they have to look after each other they both have needs and one of them is not to see me in such distress in a constant basis and to make my life as comfortable as possible now. I really was so distraught and I put the phone down and she never rang back. The fallout affected me quite badly as I am very very close to my brother-in-law who is the brother I never had. I have to phone him at some point.

I’m going on Tuesday to at last see a bariatric medicine consultant to talk about the hunger , genetics and support around the type 2 diabetes, my funding for libre , my Victoza treatment and to help me with food struggles as I’m on a restricted diet as vegan and severe IBS but I do eat eggs . A staple of my diet .

Next steps are to integrate with the hospice palliative care team and my other health care professionals.

Thank you all for your wonderful support .

Special thanks to Beth Kelly, Charlotte Walker aka Bipolar Blogger , Dr Adrian Brown and Dr Abd Tharani .

,,

.

Anger , destructiveness , hope , HCPs

General trigger warning ,

Diabetes – I’m Type 2 but any diabetes ref is general reference

The last two months has probably been the most traumatic for years. This isn’t a depressing blog but a very tough read with real optimism & hope thrown in .

I was offered a new flat . A bright airey large brand new built flat in an incredible Extra Care development. It was exciting and hopeful. Then the complications started ….. Meanwhile I was reaching a very tough stage in the Victoza treatment package. I am very motivated and totally adherent not easy on 1.8 mg . I finally got into treatment and there was something happening. I have a terrific personality disorder treatment team and newly qualified GP. Lots of positive things .

Having a complex physical disability meant that there were lots of of things to get organised in my life not just because of the flat . I’d been assessed for my own wheelchair and a very thorough assessment taking good note of my specialist needs and spec for a chair . The wheelchair OT & physio went away . Promised me they’d order the prototype then bring it round to check size etc and then if ok they’d get it finished . That was two months ago . I heard nothing . I rang Company who are commissioned by Barnet and the physio rang saying he’d been off sick but he’d phone me tomorrow as the company had finished the prototype and he’d bring it round , he never rang back he knew and his manager knew I had amputation of big right toe and left foot ulcer and it was urgent. Two registered AHPs . To date no word .

I went to diabetes clinic saw consultant. Rude again . I’ve been receiving diabetes consultant reviews quarterly ( not him for 20 years he’s very junior just got new first big job) . I received no clinic letter or appointment. The secretary informed me my next appointment is DECEMBER . Like been moved to twice a year and he never said . No discussion with me or GP. It threw me and he claimed to a senior manager ( he refuses to talk or email out of clinic) I was very well so don’t need regular reviews . I’m on novorapid, wrong ratios he said , lantus , Victoza and self funding libre as I’m type 2 . I lost most vision in left eye with left eye bleeds and high risk plenty . Bullied me for a year to be managed by bariatric medicine completely at hospital x where it’s not even commissioned…..then no encouragement when I engage well and work hard with a post doctoral bright superb bariatric dietician on R&D not commissioned time . As I met him on Twitter and thought these bariatric professionals are wonderful. The powerful emotional response by me was met with ‘it’s your BPD’ . ‘Be happy you doing well’ , ‘he’s the expert ‘ ( not on my book not in obesity neither) . Real experts don’t do that . Find me a real excellent consultant who does that without communication. I may have BPD but I’m all here …..

I had to organise transport to see the flat . I’m upstairs so needed a bariatric ambulance crew with stairclimber to be funded . The CCG refused then mental health panel agreed it was CCG . My parents paid as they can afford it . But hope to get £950 back one day ….. it’s going round in circles. Now CCG saying it’s social services who say its health . You couldn’t make this up . 8 of the most senior managers involved, and I need another trip when I move . I need a new bed and this paragraph applies again . My GP has been outstanding. No issues re letters .

Back to diabetes & obesity stuff . So I plead my case by email to manager re diabetes I’m blocked from approaching medical director. Next as I’m psychiatric patient they all want MDT . Flip ….. yet the consultant has hopeless engagement skills . I want out from team the hospital has so much traumatic memories. Sepsis ( I was sent home refused IV abx to have shock two days later, surgery & intubation) . It comes flooding back . I’m angry really angry . I start to self harm ( I bite my fingers down and head bang , start eating chocolate after none for six months and losing weight) . I lose it but measured ……

Last week no resolution on diabetes front but incredible work with Dr Adrian Brown. An expert obesity research dietician. I’m on food diaries , re structuring my eating patterns with insulin doses and carb intake and at last he really understands night eating. No stigma just tough psycho educational & skilled work . I have to just stop carb loading at night . I’m really trying . Think about getting soup into my diet ( I have !) and keep those insulin corrections down if possible. Not easy but who said weight loss , improving glycaemic levels and feeling empowered with some weight loss thrown in . Another lesson is to ‘stop getting weighed’ , other ways to know like my increased energy levels ……

Then last week came . Hit me like a Beirut bomb . I felt so angry about the desperation of the shift in diabetes care . It hit me hard . I felt unheard, trashed and not worth Consultant time . It was rude , insulting and just bad attitude, I’m complex and have support on twitter when I open up my desperate feelings . I started getting suicidal ideation . I played with my insulin pens dialling up max doses sitting ready . I opened emergency disposable pens boxes , needle on all of them . Took needles off next day . Back in fridge . Ready in Tupperware box . I told PD team and psychiatrist refuses phone call until next Friday. I have plans they all know .

Last Friday my next door neighbour of 15 years , Irene has massive heart attack . The cars , ambulances and crews all inside next door . I knew she was very ill / frail when I saw her legs last month . Severe CHF and angina . She sounded weak she told me a month ago ‘I’m dying I am on way out life isn’t ….’ we spoke most days on phone . I bought her strawberry cheesecake on my Ocado shop she said it was nicest she ever tasted . She liked 4 pints of skimmed milk and weetabix . It’s on my favourites. She died . I’ve lost a precious friend. Her son had been her full time carer whilst working . He was separated. He had renal transplant 3 years ago . His wife unusually perfect match . She said the Hammersmith team saved her son. We sat together drank tea whilst he was in theatre . So she’s gone . I’ve lost independence, my big toe, my dignity, my regular diabetes reviews, a best friend , and no news on my ESA doctor home visit but she said seeing my bedroom, how ill I am and def can’t work……..

This week came to a head . I lost control . I’m jealous that Irene died . Very . GP knew her , we talk but obviously he didn’t break confidentiality but good to talk about someone he knew too, He told me it was wrong to be jealous ….. I let rip on Twitter my anger at Adrian , he refused me a phone call for a week ( busy I knew he was but I f was cognitively impaired with extreme affective instability) and I’d had a shit hypo and I was scared, food in chaos , then I lost perspective that he’s busy very busy and actually I should have rung DSN but in past have found she said you need to get consultant advice as …… then it’s frustrating circle of no consultant contact . I was fired up . It’s not a great place to be . I fired off my anger on Twitter at Adrian. Multiple DMs too . Talk about affect storm …….. not had it this bad in years .

I wake up mortified. Aghast . Public apology but I was more than humiliated. Felt like the illness took over . It was really frightening . He was tough with me but in good way . However we both knew the reality of what happened. However super impressed as no PD stigma just very professional with the right level of compassion and allowing me to try and regain my dignity bit by bit . He’s been very good as really understanding of chocolate stuff . Treatment continues. I don’t ever not tell what’s happening food wise to my GP and team. Some respectful some less so .

Had some incredible advice & support from many and I don’t want to do a list of names but someone please buy Dr Partha Kar a cold beer for me and Beth Kelly a box of Diet Coke .

As for diabetes, I’m moving on . New hospital, new clinic referral done . Change is very very painful especially when so many changes in next two months . Courage , peer support , and good treatment keep me going . Oh and today marks week 13 of Victoza.

**********************************************************************************

The Consultation

This week I went to see my consultant diabetologist. I had a rough start 15 months ago. A new consultant in a hospital department I was known well . Initially last year I realised how junior he was. However in last year we both had good and difficult experiences. Initially his language around my obesity and complications with Type 2 diabetes was very unpleasant and clumsy . I felt spoken to roughly and unkindly and I ‘should be under the bariatric service as he has no obesity experience’. ( yes I could tell) .

Around the same time on Twitter there was a lot of discussion around Language Matters . This came out of the online community of those PWD Type 1 . I was the only vocal person with T2. However NHS England did lots of work on this but Type 2 and obesity was left off however much of the document was relevant. I was able to teach my consultant through rocky appointments how to talk to me and difficulties with letters that there is a better way . So roll over to this year . I had made huge progress despite very limited diabetes support . I got courage and it was so painful with my ex history of binge eating and bulimia to go back to the lovely diabetes dietician and ask for help. I’d gained 22kg in 6 months . It was immobility, breathing problems and denial post amputation plus permanent vision loss . Huge stuff and up and down care with the personality disorder team . It was traumatic and I was in such despair. My GP a NQ doctor doing a stint for my proper GP is outstanding. He supports me well. His diabetes knowledge is great . cried a little at dietician and agreed I’d go back on Victoza. I had it few years before but wasn’t mentally ready . I now wanted the treatment. I went up to use the proper scales not flimsy ones in diabetes clinic, in the bariatric surgery clinic. I was known by the nurses there as that’s where the ENT clinic is so I had no issues . I got on the scales and had BP checked on a proper machine , deep breath it’s done .

The diabetes dietician told me the academic bariatric dietician at UCLH Centre for Weight Management really wanted to work with me . We met on Twitter during an obesity web-chat I found out through European Association for Study of Obesity conference tweets and discussion.

I met him on twitter and we engaged well, I emailed consultant and said yes please refer. Done. He sent letter to me to say he did referral and was very positive.

I started the Victoza and I’m about to start week 6 at 1.8mg. I lost 1.2kg after two weeks , I’m very adherent and my blood pressure, A1c have both dropped . I no longer have NAFLD . I have been self funding Libre sensors since March last year and my markers have dropped steadily .

However in the mean time I had 2 left eye bleeds and been left permanently semi blind in left eye .

This huge turnaround was for me a remarkable turning point . It’s multi faceted and fundamentally the Twitter community , diabetes, medical, psychiatric, bariatric and everyone who has engaged. You all helped . The bariatric crew you know who your are but Bloody special. The empowerment was so moving and I’m now a different person. I’m in therapy with my personality disorders team, PA Carers , my sister and friends and the extra fab Beth Kelly a DSN from the DSN Forum ……on Twitter …..I’m managing things better , it’s HELL for me on Victoza I’m not going to say how wonderful as I’ve IBS so double GI. However a wonderful drug where weight loss for years the very first time is achieved. I’m moving in 4 months to an Extra Care new build bright sunny luxury flat with huge rooms and terrace balcony I’m excited.

I go into my appointment. He’s running very late , stressed as he has two emergency admissions and two hours late when normally a stickler for the time and proper procedures! I get a glowing smile , his eyes light up when he sees me in corridor and I said it’s ok …… I go in and we jump into agenda , my weight , the bariatric referral, hypertension, diasend , insulin problems and vision ……..we sit and focus and he asks me intensely about my weight . With a gentle voice on the word weight. His voice softens . He gets it . I smile . He gets it …….There’s positive engagement I’m explaining everything. He validated my efforts and agreed I need to up to 1.8 mg . We look at diasend data in depth . He’s concerned about my ratios . We jointly agree I’ll use a carb blood glucose meter with bariatric dietician to help as my corrections although ok as I eat more two hours later are then inaccurate. No judgement no stigma just openness & honesty . I tell him the Victoza has really helped with night eating . He tells me yes that’s great and I get validation for reducing the lantus and cutting the hypers and using the sensor wisely. He knows I can’t use semaglutide so we discuss next steps re hypertension. ACE or CCB. I’ll need both but for now ACE . Yes I can choose and if the cough bad we have plan B . He asks about bariatric team and the dietician. I said I’m seeing him soon.

At that point I pluck up courage as it’s upsetting. I’ve not had a chance to talk to him about the loss of sight . I tell him the Avastin is not working and I’m not surgical candidate as my breathing and Type 2 Respiratory Failure . He asks about laser I say no it’s contraindicated in retinopathy. I am in tears , he’s three hours late , he pulls his chair closer and looks at me with firm clinical concern but genuine compassion & kindness. I’m so sorry I’m so so sorry……… so that’s why you need to get your BP and weight down . Firmly said but softened voice . He’s outstanding. I’m moved . I’m struck by how we are engaging now . Wow . No one ever …….

I leave very moved I can’t wait to get home ……..

Follow Obesity Media UK for details of web-chats next one on discussion about weight Wednesday 26 June 8 pm .

Thanks to –

Dr Abd Tahrani Mr Zaher Toumi Dr Adrian Brown DSN Beth Kelly Dr Steph de Giorgio

for teaching me on Twitter that the treatment of bariatric patients is not just about surgery. Medical management, support & behaviour change . It’s about combatting stigma and that Language Matters

–

Type 2 diabetes & the media . Plus the amazing Twitter community.

You cannot have failed to see on the BBC Type 2 diabetes and rising cases & costs this

There was also excellent coverage of type 1 diabetes and the ongoing postcode lottery regarding the Freestyle Libre glucose flash sensors that have been approved by NHS England however this still remains a complex issue regarding several CCG s refusing to accept the NHS England National diabetes team guidance and criteria. This has been an ongoing campaign with complex health politics especially in London – resulting in a large majority of eligible people nationally with Type 1 diabetes able to access this amazing piece of forward thinking technology that works jointly with local and national diabetes teams help to empower , engage , work out and fundamentally research clinical effectiveness in management of blood glucose levels through insulin pumps or multiple daily injections.

However this blog is not about this campaign it’s about Type 2 diabetes and what has been happening in the media this week however I have to give full credit to a number of amazing people-medical & health care professionals, campaigners, people with diabetes and the mental health & GBDoc community . This GBDoc community talks about glucose sensors, both types of diabetes, different types of treatments and technology and it’s a wonderful feeling that the community comes together and there is a wonderful flattened hierarchy.

Most of you know my story and the amputation last year. Imagine turning on the news and the first item is a very brave man who lost his leg through type 2 diabetes complications and at this point I specify The rest of my blog refers to type two diabetes.

The news item was focusing on the huge rise of Type II diabetes in the UK. The News feature for me represented three parts-children increasingly diagnosed with obesity, the rising cost of medication whether tablets or insulin, and the clinical complications of Type II diabetes as a result of unstable blood glucose levels long-term. The gentleman concerned repeatedly said

‘it’s my fault and I should have taken more notice of what the doctor told me so this is totally my fault’

You see him walking with his new artificial limb aided by the physiotherapist along two bars . I already had a very difficult week and I was due to go to the diabetic foot ulcer clinical to see my consultant and the team and Hospital transport let me down so I was agitated . So to then switch the 6 o’clock news on which I do every evening was extremely difficult for me to watch and traumatic but I was curious as it was Hugh Pym The BBC lead health correspondent who headed up the report .

As I was reflecting on the report on the news my thoughts were flying all over my head. I have a severe mental illness-borderline personality disorder which is complex trauma and the history of eating disorder – multi impulsive bulimia . It was a real struggle to get the right help and I was punished being an overweight Unhappy teenager . Bullied by my mother , endocrinologists who would starve me in hospital and getting the right psychiatric help. My mother refused any help like family therapy and the trauma of being overweight my whole life resulted in type 2 diabetes with complications. Eventually I got really good psychiatric help with long term psychotherapy. It worked where the food became so much better over time however by then I was on whopping amounts of insulin .

Fast forward – I developed foot ulcers . Was it my fault that the amputation was on a toe ulcer that developed osteomyelitis and sepsis and I wasn’t told until the month before it was cellulitis . Was it my fault I couldn get good Psychiatrist intervention with trauma informed care at an earlier stage ? Those who know me know I bang on doors . I really did but I was banging on the gates to a high security prison . I was told go away ……

yet the clinical care for diabetes was very good . One consultant used to talk football to cheer me up and make light in a way of severity but he did say be careful ….. the dieticians never ever pushed blame . Denise the sensitive one at the Royal Free said

‘ I can’t teach you what you know let’s just try and get your insulin doses to match your diet ….you’re juggling so much ‘

That was the overall good support I got. I got health psychologists and I had good diabetologists. However the ten years of bulimia took their toll ten years after the food got better . One consultant said kindly ‘sweetheart your efforts are good but it’s the first ten years catching up now …..’

I found the diabetes twitter community through the medical & mental health twitter community by chance . Certain names bandied about Dr Partha Kar , Dr Jonny Tomlinson , who writes about complex trauma and the narrative in powerful extreme vivid yet medically informed care, Dr Shibley Rahman , Annie Cooper and you then meet many others ….. you know the old Twitter network. Recently Amybetic wrote about the painful struggle and feelings regarding eating disorders , body image and T1 diabetes .

I currently self fund a libre sensor as I need one. I value the way it obviates finger pricks 6 times a day, I know which way my levels are going and my management is shared with my clinical team . I have no resentment for self fund just appreciate the twitter community for teaching me so much re this smart tech bit of kit especially Nick Cahn a smashing vocal campaigner for the Type 1 Flash for DM campaign.

Thanks for reading this .

___________________________

Positive Changes in the Type 2 Prevention Movement….

Today started with the news on how NHS England is limiting operations with limited outcomes to save money such as throat operations for snoring problems.

You will have to have been hidden in a dark cave to not have noticed the huge discussion on social media since NHS England launched National Type 2 Diabetes Prevention Programme . This excellent programme has been on full speed as promised by Dr Partha Kar and his excellent team . Including the nurse education programme.

June kicked off with The Truth About Carbs with Dr Xand van Tulleken. At the same time Dr David Unwin’s low carb work as a GP and Type 2 Diabetes prevention work was further exposed through the TV programme. However the ‘buzz’ on Twitter had been growing for the last few years with the NHS community especially with those professionals who have specialist interest in endocrinology or general practice and metabolic syndrome prevention , Type 2 Diabetes management & diabetes specialist nurses as well as dieticians and other HCPs. Good discussion with lay people and members of the public too who have either reversed their Type 2 with a low carb or any other diet , they rightly so celebrated their achievements.

The other day I dipped into a warm welcoming and highly educational web chat with health professionals working within the bariatric medicine & surgery field . Consultant physicians, surgeons , dieticians & nurses. I noticed no patients took part not because they were not welcome however they may not be aware of the growing brilliance of the Twitter discussion, educational & network support movement . Nor were there any consultant clinical health psychologists in the chat yet we have a huge NHS psychology & psychotherapy community which is a wonderfully engaging and lively group . The psychodynamic impact of surgery is huge and whilst clinical effectiveness is pretty up there for the right patients the psychologist & psychiatrist input is very important and can only add further to the development of these services in the UK as part of prevention in The development of lifestyle risk factors added on in addition to Type 2 Diabetes . It was an outstanding chat.

The distinction between those who have complex eating difficulties such as severe binge eating disorder & complex trauma is important . This is one group of people who will need careful thought and a mental health input approach without concerted effort to understand and the emotional despair before any discussion on what can ‘feel’ like quite violent physical and mental assault on someone who is affected by physical& mental health distress. The excellent National Diabetes Language Matters Document outlines the way language is used in a non stigmatised way in both Type 1 and Type 2 Diabetes .

This can be thought about as an exceptional way of how to approach all patients needing consistency, sensitivity and careful consideration for complex medical and surgical procedures such as bariatric surgery.

How as a clinician do you approach a patient you believe is the ‘right ‘ one for bariatric surgery referral? I’ve had nasty experiences from many consultants in respiratory medicine – they seem to be the harsher category I think as they deal with the sleep apnoea resulting from obesity and respiratory failure . I was seen as difficult for being overweight and moving to a super specialist service at the Brompton Complex Ventilation Team was a breath of fresh air . Trauma informed , consultant clinical health psychologists, outreach nurse specialists and amazing Professor with her tech team. I never have the emotional assault more the ‘how are things ?’ , ‘what are your struggles right now ?’ ‘ great to see leak is 25’…….

Check out Dr Jonathan Tomlinson’s blog Talking about trauma in primary care

The positive move in how professionals support & work with patients who are affected by weight problems is welcoming . I’m not against low carb it’s been shown long before the latest buzz that carb watching with guidance has enormous value in both types of diabetes . Even on TV How to Eat Well for Less shows a family with a young son with Type 1 Diabetes on a pump and the carb issues and challenges. However I digress I am focussed on Type 2 in this blog.

Type 2 diabetes has hit me hard so i am very all for progress in tackling the obesity crisis. Binge eating disorder in the past caused the T2.

It’s miserable and hardly a bundle of joy . My eating Disorder was tackled with years of brilliant behaviour and psychodynamic work with both mental health professionals and consultant health psychologists. I could tell you about my complications but I’ll save that as most of you know my story . However my last message in this blog is think about why your patient is overweight. I guarantee there will be a large cohort who have complex relationships with food some definite with complex trauma. This blog by opens the door as to how what may appear as straightforward ‘ they can have surgery and it will help …..’

If you believe some health psychologist sessions will sort it out . Hold that thought and consider referral to your local Eating Disorder services for skilled assessment. Most are now nationally super specialist commissioned for Tertiary obesity assessment & treatment. Fast track long waits ( the waits are long!) if there are T2 diabetes complications such as stage 3 retinopathy or severely infected ulcers . These services are there to support everyone involved .The Twitter community . You all such fabulous people.

Congratulations to the https://awards.nursingtimes.net/shortlist-2018 three Whittington nurses. One Nurse of the Year Nomination was mine. Dorian Cole. He has helped the outstanding staff understand my complex trauma through very tricky and distressing times in joint consultant foot diabetes clinics.

Disability and bereavement

TW

Bereavement. Suicide . ( Not linked )If you’re not in a good place then please note this is a tough read.

I couldn’t visit my friend Julie ( pseudonym) in hospital. She was in hospital for about 6 months. She was 75 and had bipolar disorder since her twenties and end stage of renal failure for 40 years . Unrelated to bipolar.

In her 20s she had ECT as that’s what they did back then. Her husband a wonderful GP loved her and stuck by her they have 3 wonderful children.

Over the years her husband took her everywhere all over the world to visit her children and grandchildren. Organising health care was no issue for him. She was on home dialysis and he knew all the renal units wherever they went . He paid for it all. That’s what he worked for.

I met her through my parents . I warmed to her immediately. I went there for tea on my own and sat and just held hands often saying nothing. We didn’t need to. I sat with her in the conservatory looking at her wonderful landscaped garden she designed herself – she was a horticulturist.

Last year I went through my own hell . I lost my toe and was in ITU – waking up wishing they hadn’t got the tube in – in time . I was furious but as my parents sat there I was unable to tell them . The liaison psychiatrist came and was amazing . She knew and said it was really understandable.

I went home after rehab and my life changed . My breathing problems got worse . I had another admission for respiratory failure . I so wanted to die . However Julie rang me and she was the only one I could tell. She told me her support was unconditional. We did face time from her hospital bed to my bed . I was moved . I wasn’t told how sick she really was .

I came home and have been out of hospital 9 months . That’s really good for me .

However just after Christmas my mum broke the news Julie was very ill . I asked . I really needed to see her . However I was housebound and I couldn’t go. I saw her twice as I was at the same hospital for appointments and a kind ambulance crew took me up to the unit . I could see how delirious she was from the high morphine doses.

She stayed there until a week ago . She came home to be with the family who all flew in to be with her. Her husband was giving her the injections. He told the palliative care team his wife and his responsibility as a doctor. They say doctors can be stubborn. The palliative care team were amazing. I had some support from them with difficult questions like ‘how long?’. I had pangs of guilt that I wanted to commit suicide yet …….

She passed away last Thursday night . The funeral was Friday . I couldn’t go due to disability. I felt numb and powerless. I still do. Nothing I could do. I couldn’t get to Shiva .

I cannot describe the feeling. Of hollow numbness . The inadequacy I felt but on my part not her family . It was me feeling like…… I wanted to be there . I won’t be at the remainder of Shiva .

So it hurts . I’m going to miss her however her husband and I are talking more and I never heard an 85 year old so broken he can hardly speak. My dad was broken when I was in ITU . The tears . A very strong man.

So he will be my new close friend. I’m really appreciative to everyone on Twitter who was so wonderful over the weekend.

My wonderful ad hoc carer suggested on Friday we bake cupcakes for my wonderful GP practice. She had been here during two difficult home visits in recent months and seen how special my GP is. My GP helped me so much with my diabetes care when I had no clinic and helped get me back into a good consultant clinic . She keeps tabs on my blood sugar levels in a good way as she knows my history…….she learns from me . She knows when I flip do do my BGLs.

It’s a painful issue the whole disability thing. I’m not the first or last not to get to a special funeral or to have the strong emotional arousal of suicidal ideation because my own stuff makes life fucking shit . I can’t put it more politely I really can’t .

However I’m finally back in with a good PD team assessing & supporting me in some way after smashing through the ‘no ‘ barriers . Took a year but I’m almost there.

New week new challenges. The best thing is my diabetes control is fairly tight again after 3 months of poor control. A good new consultant and his amazing team. So there is a reason to be hopeful . The small things that are massive .

Challenging Behaviour

It started very gradually. I’d been asking for help from the mental health team. At the same time I was struggling with physical health care stuff. I had 3 sessions left with the private clinical psychologist going on maternity leave for one year. I was working with her on treatment adherence and also the flashbacks and upsetting feelings that are floating around.

At the same time certain behaviours that I had worked so hard to control and manage started to emerge . Some because of pain I was experiencing in my head with a physical cause and I was becoming extremely agitated. Then I noticed my aggression got progressively worse. It was happening more often and behaviour that I had thought I had put away in my past from years ago had started to rear it’s frightening head again. This became frightening and extremely distressing for both myself and certain health professionals. At the same time I was becoming very dependent on one senior health care professional who although wasn’t providing direct clinical treatment was very involved in sorting out various pathways. Emotionally I felt so volatile & Fragile at times. I lost control of certain boundaries, losing my temper a lot . There was a very strong uncomfortable feeling inside me. I felt angry, In such despair, lost and at huge risk Of destroying the very special professional relationships that were there to help me shift and manage the complex clinical difficulties.

I always remember the whole dependency stuff being very difficult for me. One reason I always understood from the therapy work I had done is if I found good professionals it could be if I was not in a good place that I overstepped the boundaries of acceptable behaviour. It wasn’t about me being told you are not to do this and my feelings could be hurt and rejected – taking over-it was about the struggle over holding on to something that was extremely important to me as it was a good positive experience in a professional relationship. If I had a very negative experience I was left feeling dejected, invalidated and extremely frustrated. I’ve never actually been very good at relationships-personal or professional.

In maintaining a really good relationship with professionals who ensure I have good clinical care it was important to restore the balance between how my aggression is managed as well as the dependency issue on one person . The aggression was a really painful snapshot of reality that was shoved under my nose. In a room with two senior managers who are both consultant nurses . One who knew me and my past and was working in a non MH role but trained at high level in both physical & MH . the other a physical health care nurse. Exploring The realities of my behaviour and what was happening and how other nurses are left feeling . What happens when I feel so agitated and how can we work things to stop this situation becoming more conflicted and complex and effectively to detriment of my care, treatment & esteem . New care pathway boundaries jointly established and the opportunity to resolve certain immediate stuff. The opportunity too for the nurses treating me to be given the support & explanation into working with wound care patients who are experiencing severe emotional distress and trauma. Explaining what personality disorder actually is and myth busting .

The dependency came up for me after I had alarm bells in my head for several days. Something deeply uncomfortable hit me the other night . The arousal of certain feelings . Contacting this person more than was reasonable, by text or emails which for me felt excessive & extremely distressing nor appropriate. It was pushing things for me as I have huge respect for them and they never ever put me in a difficult place re my demands . Always honest but never rude or invalidated me.

I kicked in some new strong boundaries. I stopped the texts and cut the emails and calls. I can let the reins ease a bit when I choose and feel less aroused . We both thought about what the main over step-from my perspective was. It wasn’t about me being told I’ve overstepped. I hadn’t . They would have said . The transparency here was top notch . I was told before I wouldn’t have noticed this early so it was clear progress on insight. Open, honest discussion that I initiated. The kindness, high skill and professionalism in the intimacy of the delicate balance between the intensely powerful feelings that need taming down and reining in to the emotional volatility, validation and recognition of my own fragility that pushed me into the locked room of trapped one way behaviour. Opening the door so I can come out and face a new risk and opportunity to keep a special professional relationship alive & well. So it’s hard but it’s early days .

The positive power of change

Trigger warning for the last section re emotional vulnerability

Twenty years ago in an intensive group and individual psychodynamic psychotherapy treatment programme for my complex difficulties something quite powerful happened that stayed with me. The brilliant clinical nurse specialist in psychotherapy said in group as painful feelings were discussed re behaviour that affected us in all aspects of life. Work, study, eating patterns , relationships and so forth .

‘Change is so so painful.’

I held on to her words said with depth, compassion and real desire to help us shift from the sheer despair and life struggles to happier more fulfilling days.

Over time I developed a strength inside that helped me to shift from a very miserable tormented woman to someone with a desire to shift and change into a better person. In Alice Miller’s work the sheer brilliance of thinking about the analysis of wounded childhood she talks powerfully about the child who was spoken to and refused freedom of natural expression whether the hurt of abuse or moments of joy . The sheer acquiescence of the group psychotherapy where the wounded child was in the group as the psychiatric system sent them there as a last saloon. It was known that if this didn’t work next step was a residential therapeutic community or the criminal justice system for some who continued to offend .

Years later having left treatment I started doing some dynamic work with specialist commissioners at the Department of Health . The work was innovative and meaningful. I developed skills and insight into corporate style commissioning work that was complex however with dedicated commissioners and clinical leads as well as Experts by Experience who held fire inside their hearts and guts and really engaged with whoever they could . Going back to group therapy quotes- change was so so painful. Challenging the stale treatment as usual generic teams was like shifting a nasty viral load that just won’t go down no matter what you threw at it .

Training everyone was priority and team leads in psychiatry were all encouraged to get trained up. From psychiatry to psychology and nursing to other AHPs. Many ducked out . Mandatory training one psychiatrist played with his phone then walked out. We remembered that when 3 months later he applied for a medical director job. He didn’t get it . Staff sat at the back , one psychiatrist told me in the training there is no place for Personality Disorders in community teams. As there is no treatment. A senior psychiatrist. He was given short shrift by myself and our team leading the training. He refused to apologise. I bawled my eyes out in the breakout zone and the DBT lead sat with me and validated my work and his lack of insight . I went back in.

We worked hard as a team on zero cost business plans as local commissioners would not budge . Yet in borough next door a Beacon Unit was visited by international teams regularly. They had fewer admissions and higher levels of input by crisis teams as staff saw how good training and good treatment effected change . It was painful pushing staff out of dark age views. Psychiatrists forced to think not just prescribe and not hear the despair. Psychologists and nurses pushed to think how they work. The painful reality was that some psychiatrists, psychologists and many many nurses as well as occupational therapists just kept hold of old ideas and refused to embrace the excitement of change & transformation. They wanted to push emotional distress to the level of psychosis or those with affective disorder diagnosis. Mention complex PTSD or personality disorders it had a huge division. The small brilliant group who really battled on and went on courses and ran to supervision feeling empowered yet with a learning sponge .

As transformation in the NHS has been a good thing for diagnoses such as diabetes ( both types ) & oncology it’s been conflicted in mental health. Spending per capita has steadily dropped year by year disproportionately to the exponential gaps in nursing recruitment and expenditures on long term psychological help needed. Huge gaps . The transformation in clinical health psychology recognition is remarkable and commendable as complex physical-health care needs booms. However there is a group of patients left behind . So far left behind until this exponential gap is addressed – it’s not just a financial problem . It’s the attitude of change being painful .

To be told 15 years after the specialist commissioners, the working groups and I developed policies to address this, that when you reach such despair you want to barricade yourself in your flat and have strong feelings of suicidal ideation and plans for the first time in 15 years that you cannot have treatment for severe flashbacks and the desire to end your life is a real shock .

The Personality Disorder Consensus is a 2018 update and clear statement of the needs of those with the diagnosis.

The outstanding work of Prof Louis Appleby & his team on suicides continues.

The outstanding work with children at The Anna Freud Centre , https://youngminds.org.uk/ and Tavistock Clinic and adults with complex trauma continues especially looking at models of talking therapies. Medication? What medication? Treatment refusal ? Transformation of care in those troubled. The work of Dr Pooky Knightsmith is a breath of fresh air especially her work with the Charlie Waller Trust . Her personal fight for her own mental health . Helps others feel empowered. ( check out her climbing wall sessions ) .

The important impact of Twitter and social media cannot be underestimated- Dr Jay Watts leads of campaigns for better services not just through proper funding but real compassion and understanding. Her regular contributions to The Guardian are well written and put it out there re the change that is so painful.

So yes change is so painful but with gumption and a real desire to care and make a difference it is possible.

.