Tuesday 31 July 2012

Ambulance Drama and the A.B.H.B. Reply

Hello Sian,

Thanks so much for your email.

You're correct, the meeting with Sister Morgan, O.T., Physiotherapy, Social Services, Discharge Coordinator and briefly one of the ward doctors was very helpful in terms of the support and equipment needed for ongoing health care. It was great to have the meeting as the last one that had been arranged was only attended by myself, Steve's Social Worker and Julie the Discharge Coordinator. I'm confident that in due course all necessary avenues will be explored and procedures/equipment put in place to aid Steve's return home, which I am very much looking forward to.

My main area of concern, however, is  Steve's ongoing treatment and his diagnosis. There isn't any and there isn't one. 

Dr Fady Joseph is Steve's lead consultant and has been saying for over a year now that he has no idea what is wrong with Steve. They know there are pockets of inflammation in his brain, but they do not know how or why. I hear that locally, very test that can be done, has been done.

We asked at our last appointment with Dr Joseph for Steve to be referred to the Royal Neurological Hospital in London. Dr Joseph said that the procedure locally was to have a second opinion provided by a fellow consultant, then a referral after that, presuming that report is also inconclusive.

I have a copy of a letter Dr Joseph sent to a Neurological Consultant in Cardiff (Dr Trevor Pickersgill) on 23rd May 2012. We still do not have even an appointment booked to see this consultant and Steve's deterioration has once again been dramatic. He is now one month exactly into his current hospital stay. 

I have approached the Royal Neurological Hospital myself directly and asked how I go about a referral. I was told that even a General Practitioner can refer a patient up to this hospital.

If this is the case, I would like to know why this has not been done before now and why Dr Joseph has insisted on delaying things even further by acquiring a second opinion. My Husband is suffering every minute of every day and receiving no treatment for his illness, just pain killers and muscle relaxants. To my mind this is palliative care, not treatment.

If there is nothing that can be done to help my wonderful Husband, then we are just going to have to deal with that. At this stage I do not feel that the Aneurin Bevan Health Board is doing anything at all to help diagnose or treat him, simply manage the symptoms he is experiencing as he nears his end.

to put you in the picture of how bad a condition this 43 year old is in, I lied to get an appointment today to see Dr Joseph. The last time we saw him was April 17th 2012 and many weeks ago I could clearly see that Steve was deteriorating, so despite not having a letter to tell me to book an appointment for his clinic, I called the booking office. I pretended that I had left my booking letter at home and was ringing from work, that was why I didn't have a reference number. The call handler was confused as there was no notification that I was to book in, but eventually agreed to allow me to do it. The appointment was for 2 months later.

That 2 months was up today and, as instructed by the ward staff I arrived at Ysbyty Ystrad Fawr at 09:00 to await the transport to the Royal Gwent for the appointment. The Ambulance made it as far as the Ystrad Mynach round about before heading back as Steve's muscle spasms were so violent and painful that they said it was unsafe to take him. He had taken Diazepam and Oramorph before embarking on the journey. I totally agreed with the Ambulance staff  it is not safe for him to travel even with them, he is going to have to be sedated in order to travel at all. He now needs to travel in an emergency ambulance with qualified paramedics. Is this really a life for a 43 year old man?

I look forward to hearing from you,

Bethan Brunell

Monday 23 July 2012

Press Release Sent Today #FightingForSteve


PRESS RELEASE
For Immediate Release - Photo Opportunities on Request

________________________________________

43 Year Old RAF Veteran Battles For NHS Treatment 

Steve Brunell, 43, born in Barnard Castle, now living in Blackwood, South Wales, has an “attributable to service” injury that Doctors are struggling to diagnose.

He has areas of inflammation in his brain which have caused him to lose control of his limbs, create severe on going pain, cause massive muscle spasms and have severely affected his hearing. He also has permanent vertigo, tinnitus, and inability to move independently at all.

2 years ago he was making a recovery from the 2nd operation he received to try to fix a broken neck vertebra, sustained in a minor accident while serving in Afghanistan. Due to it’s presentation it was not diagnosed for 18 months.

Steve’s speech and cognitive abilities are also affected and his deterioration is often and rapid. Despite this he has to contend with consultant appointment waits of between 4 and 6 months, a CT scan was completed today having been booked in April, and this being the first since approximately November last year. Steve also has severe depression and severe PTSD, none of these are being addressed, in any way.

Steve feels as if he’s being left to die, his deterioration is so rapid, and there appears to be no sense of urgency in his treatments, now that the local neurological consultant has drawn a blank. He asked to be referred to the London Neurological Hospital and was told he would have to have a second opinion locally before referral. He received the request letter for the 2nd opinion for 4 months, no appointment.

A Facebook campaign group has been started and has 250 followers in 3 days. There is also a blog www.fightingforsteve.blogspot.com which has had several thousand page hits and on Twitter #FightingForSteve

For further information, quotes or photograph, please contact:
Bethan Brunell (Wife) –             07730 531 400      

Bethan


Also had VERY long conversation with local newspaper from Barnard Castle. Good start I think - today's work is thanks to Jo Read

Betty 

Xxx

Sunday 22 July 2012

He was in good spirits today - much less morose than he has been. Always good.


No particular reason for this photo but I like it. Shows us in happier times!

Lovely Staff Nurse came in and said that she couldn't understand why he hadn't been called for his MRI. Apparently, once they're aware of him being an in patient it's their ball to come and get him. She 's left it for hand over in the morning - I assured her that I would ALSO be chasing it up!

She brought in a a booklet that needs to be filled in before, during and after the MDT meeting on Tuesday. Some of it had already been filled in but there were a few things than needed more info. She left it with me to fill in as she could see that I am more than capable.

Apart from the fact that the initial person that had filled in the form had spelt his name wrong in 4 different ways on 8 different occasions, she clearly had spent NO time with Steve and I had to correct virtually everything she had written. Medications were left of the list, and most information was either missing or incorrect. I made it bloody well correct.

Things like "Steve is reluctant to get out of bed and sit in a chair" were changed to "Steve is reluctant to sit in his chair because when he has had enough and needs pain relief and putting into bed, it takes too long to summon help" and so on.

I have had emails from the Teesdale Mercury - the local paper for Steve's home town, and the South Wales Argus so far. Things are about to get busy. Really busy.

I'm starting to put my papers and notes together for the meeting on Tuesday.

Anyone got any telly connections? And PLEASE share this about - pass it on and PLEASE CLICK FOLLOW!!!

Tomorrow I'll be talking about or experiences with the military charities and support services.

Betty Xxx

Friday 20 July 2012

Bloody Furious.com

Taken from yesterday's blog:


Also, my big beef at the moment is that there is only one thing known about Steve's condition. It is caused by areas of swelling in the brain - Encephalitis, I believe they call it. Despite this being the only knowledge they have of his condition, he has not been MRI scanned or CT scanned for a year.

I went to see Steve late today - I'd been doing some work in our bedroom anticipating the installation of hoists etc. I've taken photos of out titchy room to show the multi-disciplinary meeting on Tuesday. They'll know what we're dealing with. This:



I believe The Young Ones would call it "compact and bijou".


I'm very sad to report that I found him lying in a pool of his own wee - he had tipped his bottle. He was also incredibly morose, suffering extremely badly with his PTSD.

That's not even what has made me furious.

He didn't go for his MRI.

I don't know why, I waited over half an hour to find a Nurse, outside his room, pacing the corridor like a mad woman - one Nurse was dealing with multiple buzzers going off. The Nurse that was on today was the Nurse that arranged the trip. There COULD be a genuine reason for this, there was no record in his notes that I could see and I examine them every day.

He started telling me about his P.T.S.D. being incredibly bad last night, but it became quickly apparent that it was the story that Jess and I had been discussing last night, so it couldn't have been. He couldn't tell me if it was based on a real event or a dream, but he was very distressed. The building, you see, reminds him of a building in Sarajevo where he served during the Balkans conflict and witnessed some of the terrible things that have given him the P.T.S.D.

If you've got this far down, would you please do me a favour and "follow" this blog? All you need is a (free) Gmail address and click the follow button. Could you please also share it on your timeline/Twitter?

There's not a lot in the way of email updates at the minute and I've not yet received any phone calls. That's going to change by next week - I guarantee it.

Betty



Thursday 19 July 2012

50 Shades of $hit

Today I received several missed calls from Steve at about 12:00 and a couple of text messages that only I could decipher. I took them (and was correct) to mean "get over the hospital asap as the "Doctor wants to talk to you about what you WANT for my discharge" (I went to visit him at my normal time).

I have been brought up very well, and to be respectful to those in authority. Police, Doctors, Bank Managers ...

In this instance I have no respect for these ward Doctors. Just a few day ago I was told that Steve is fit for discharge immediately and is in fact faking his level of immobility due to the fact that when the Doctor went to see him, he was playing on his "games machine".

Steve does not have and never has had a games machine. He could quite likely have been trying to send a text message to me saying "get me out of this hell hole", but he wasn't successful in that.

Every day, these ward Doctors go and see him, they tell him he has no clinical need to be there (hoisted on a ratio of 3:1, oral morphine every 2 hours in addition to the other 3 types of muscle relaxants he's on - among other things, inability to even assist in putting a t-shirt on or to drink a cup of tea without assistance or accident does clearly not constitute a clinical need) and they put him under pressure to leave. Immediately. Nothing would please him more, but as I keep explaining to Steve, it's not reasonable, fair or right that I have so much unsupported responsibility in taking him home without the prior agreement of multiple agencies.

Then, when he transfers this pressure on to me, it inevitably ends in tension for us. It appears to Steve that it is ME keeping him in hospital It's very frustrating and very unhelpful.

Also, my big beef at the moment is that there is only one thing known about Steve's condition. It is caused by areas of swelling in the brain - Encephalitis, I believe they call it. Despite this being the only knowledge they have of his condition, he has not been MRI scanned or CT scanned for a year.

WTF?!

WHY NOT?

Another thing that happened today , other than grovelly email back from the complaints people at Aneurin Bevan Health Board saying it will be escalated, essentially, was an email back from the London NHS Neurological Hospital. They say that Steve does NOT need a second opinion locally (we've been waiting 4 months for an appointment for a 2nd opinion from a Neurologist in Cardiff called Trevor something - we don't even have an appointment yet) but that simply the G.P. can refer Steve to them.

If this turns out to be the case I may have to consider legal action for not telling us the correct information and keeping him waiting until he is so gravely ill.

On the plus side, he had 2 visitors today, he was relatively lucid - his PTSD is playing up and confusing him (he's severely depressed but no one's paying any attention to that) and when he wakes in the night he thinks he's at a field hospital in Bosnia. The source of his PTSD.

I left the Senior Nurses a note to pass on to the Doctor. I told him that regardless of the fact that in HIS diary there was no record of it, on Tuesday at 13.30, there is a MDM (Multi disciplinary meeting - we (social worker and I) arranged one 2 or more weeks ago, and no clinical staff bothered to turn up) to discuss the plans and requirements for his discharge. Until then I'll be discussing it with no one.

More to follow, lots of ideas for campaigning and raising awareness going on. I look forward to telling you about it shortly.

Betty




Wednesday 18 July 2012

First email, sent today. Wednesday 18th July, 2012

Dear Lesley (Griffiths - Health Minister for Wales), Jeff (Cuthbert - Assembly member for Caerphilly), Bethan (Jenkins - A.M for Newport), Leanne (Wood - Leader of Plaid Cymru) and Dr Andrew Goodall (Chief Executive; Aneurin Bevan Health Board),

I have been considering writing to you for some time but given the circumstances I have lacked the emotional strength.

I appreciate that you must get multiple requests for assistance every day so I will keep this email brief and put you in the picture of our situation. To say that I am DESPERATE for assistance to keep my husband alive is the biggest understatement in the world.

This is my story, as published in the Caerphilly County Borough Council Carer's Support Network newsletter, and soon to be printed in the South Wales Argus:

Steve and I first met and got together in 2005. At the time Steve was a serving member of the RAF regularly travelling across the world with his work, and loving every minute of it. It was while he was serving in northern Afghanistan in 2006 that he had a minor accident, with massive consequences.

Nearly two years later after an MRI, it was discovered that he had a broken vertebrae in his spine. The first operation on it worked for a very short period of time, the second - even shorter. Steve started having problems with his legs and, hearing and balance shortly after that.

April last year Steve's illness was so bad that he was hospitalised for the first time. This, for me was terrifying as he was such a big, independent, feisty, and handy bloke to have around. It was just a few months earlier that he had finally conceded to having a walking stick to help him get about. For him, that was the biggest loss of dignity. The first one.

We had to move as we had inadvertently bought the least suitable house we possibly could have. Of course we couldn't have known. Prior to Steve going in the first time I'd had to have started to do everything. I knew it was bad when he didn't argue with me about stopping driving. It became very difficult for me to do all the school runs, food, paperwork, driving, every day I would discover a new job that I hadn't thought of that I needed to take on. I felt very "put upon", very scared about the future and how I would cope, not to mention how Steve would do.

By the second hospital stay, I was doing things for him that I had never done for anyone before. I often thought "how on earth did I end up here?" and as the realisation that I was going to have to change my goals and expectations about my most personal and precious relationship. I couldn't longer expect the type of things my friends could.

I had to give up work, Steve couldn't be left alone for long periods and I had so much to do that it was impractical to carry on, I quickly realised that the overwhelming vast majority of people are terrified by disability, and it became quite clear that some of our friends and family couldn't cope with it. I found (find) this incredibly frustrating and sad because family and friends are supposed to pull together, but they don't always. Caring can be very isolating.

A few months ago, I was feeling very alone, unsupported practically and out of my depth. It would have been very easy to just get deeper into that state of mind more alone and frightened. It was at the same time that my best friend saw a poster advertising a carer's event that I had missed already. She took a photo of it on her phone, and I made contact with Carer's Support Services at roughly the same time as I made contact with Social Services. When I first rang through to Hayley, I was on the verge of tears, and biting my lip - things were really difficult. I agreed to go along to the up coming Carer's Pamper Day, despite the fact that I didn't really want to. I knew I just wasn't in the right frame of mind - precisely the time you need to act.

When the pamper day came, I dragged myself up, put my make up on (soon to be regretted) and made my way up. I stood in the car park and cried. What was I doing here? I should be at home, caring for Steve, or doing something for him. I'm not a carer - I'm just a wife with a husband who is disabled, I gathered together everything I emotionally had (not a lot) and walked in. I met the organising ladies that were very welcoming, and promptly burst into embarrassing floods of tears repeatedly through the session!

Currently, we are in a very different situation. Steve was unsafely discharged from the Royal Gwent Hospital around 20th June, he has been re-admitted to Ysbyty Ystrad Fawr - 3 weeks ago tomorrow.

Steve has now lost virtually all of his bodily function. I am currently studying the Mental Capacity Act 2005 as his cognition has now altered such that he is no longer able to retain information for any period of time, and has been recently delusional. The nursing staff, while utter angels, have not noticed his cognitive alterations as the ratio of staff to patients is such that they have no time to notice. The ward Doctor is so keen to get Steve off his ward that he seems to be resorting to over looking basic information and constantly putting pressure on Steve to go home - Steve then transfers it to me.

The Doctor perceives that Steve's needs are not "nursing". He must be hoisted from his bed with a staff ratio of 3:1, he is incapable of administering or even prompting his own medication, one of which is morphine. He requires help with eating, washing and can no longer shave himself or even pull himself up on his bed to put a clean t-shirt on his CHC assessment puts him at a moderate/high risk.

My husband is 43 years old, the consultants appointments are 4/5 months between visits and I am convinced that he will be in a vegetative state before the next appointment. He has not been MRI or CT scanned in nearly a year despite 20+ weeks in Aneurin Bevan Health Board hospitals - I'm pretty sure that Nie Bevan is turning in his grave.


The Facebook group I have set up to document my fight is: https://www.facebook.com/pages/Fighting-For-Steve/431065666943740?ref=hl

And the blog I am writing about this is www.fightingforsteve.blogspot.com

We have been featured in the press on numerous occasions and am happy to provide cuttings or links.

I am hoping for a prompt response and your support. Is this too much of an ask? I really hope not.
 
Bethan Brunell

(*Only a FEW details removed to preserve Steve's dignity)

The Big Fight


  












These photos are why I am fighting. Steve and I have been together only 7 years, that shows how recent the photos are.

Steve's currently in hospital, has been for 3 weeks now, and it's become apparent to me that unless I start kicking up a BIG fuss, I am going to lose him. How much of him has already been lost for good, I do not know, but what I have I'm going to sodding well fight for.

Not familiar with our story? He're's a piece I wrote for the Carer's Support Service news letter. we're hoping it's going to be a substantial article in the South Wales Argus:





Steve and I first met and got together in 2005. At the time Steve was a serving member of the RAF regularly travelling across the world with his work, and loving every minute of it. It was while he was serving in northern Afghanistan in 2006 that he had a minor accident, with massive consequences.

Nearly two years later after an MRI, it was discovered that he had a broken vertebrae in his spine. The first operation on it worked for a very short period of time, the second - even shorter. Steve started having problems with his legs and, hearing and balance shortly after that.

April last year Steve's illness was so bad that he was hospitalised for the first time. This, for me was terrifying as he was such a big, independent, feisty, and handy bloke to have around. It was just a few months earlier that he had finally conceded to having a walking stick to help him get about. For him, that was the biggest loss of dignity. The first one.

We had to move as we had inadvertently bought the least suitable house we possibly could have. Of course we couldn't have known. Prior to Steve going in the first time I'd had to have started to do everything. I knew it was bad when he didn't argue with me about stopping driving. It became very difficult for me to do all the school runs, food, paperwork, driving, every day I would discover a new job that I hadn't thought of that I needed to take on. I felt very "put upon", very scared about the future and how I would cope, not to mention how Steve would do.

By the second hospital stay, I was doing things for him that I had never done for anyone before. I often thought "how on earth did I end up here?" and as the realisation that I was going to have to change my goals and expectations about my most personal and precious relationship. I couldn't longer expect the type of things my friends could.

I had to give up work, Steve couldn't be left alone for long periods and I had so much to do that it was impractical to carry on, I quickly realised that the overwhelming vast majority of people are terrified by disability, and it became quite clear that some of our friends and family couldn't cope with it. I found (find) this incredibly frustrating and sad because family and friends are supposed to pull together, but they don't always. Caring can be very isolating.

A few months ago, I was feeling very alone, unsupported practically and out of my depth. It would have been very easy to just get deeper into that state of mind more alone and frightened. It was at the same time that my best friend saw a poster advertising a carer's event that I had missed already. She took a photo of it on her phone, and I made contact with Carer's Support Services at roughly the same time as I made contact with Social Services. When I first rang through to Hayley, I was on the verge of tears, and biting my lip - things were really difficult. I agreed to go along to the up coming Carer's Pamper Day, despite the fact that I didn't really want to. I knew I just wasn't in the right frame of mind - precisely the time you need to act.

When the pamper day came, I dragged myself up, put my make up on (soon to be regretted) and made my way up. I stood in the car park and cried. What was I doing here? I should be at home, caring for Steve, or doing something for him. I'm not a carer - I'm just a wife with a husband who is disabled, I gathered together everything I emotionally had (not a lot) and walked in. I met the organising ladies that were very welcoming, and promptly burst into embarrassing floods of tears repeatedly through the session!

I don't mind telling you that some of the tears were relief. Speaking to someone who "gets it" was the most liberating experience I have had. Despite the different situations, essentially, we were all the same. None of us "wanted" to be caring, but none of us would change it for the world. Lots of ladies had forged long standing friendships by meeting through carer's groups, and were a tremendous amount of support for each other, making the role much more achievable and much less daunting. Men were carers too - it's not just women, men care also.

Currently, I've been to two carers events and I'm really looking forward to the third. I have new friends who are in the same boat as me, and things seem good. Steve is stable, life feels possible. It's so important to feel part of society and the community. I now feel much less guilty about leaving Steve for short periods, thanks to some advice I received from a fellow carer, and I feel much more in control. We all know the theory that if the carer falls everything collapses, and our first duty is to ourselves, to reach out for support and to maintain our well being. Of course our relationship has altered, but we're still dead happy, just not in the same way.

We all have to mange the burden, why not get the support you need?