Up until Ellie became really unwell I used to work in the Imaging department of our local hospital. I'd started out there as an HCA (Healthcare Assistant), but when a position as a Trainee Assistant Practitioner in Plain Film and Fluoroscopy came up (which basicly meant I'd get to learn to how to take X-rays) I applied for and was offered the job. I started in September 2011, it required me to attend university up in London one day a week, and then train on the job in the hospital the other four working days. Even though I spend most of the week in work, taking X-rays, I was still considered a full-time student, as most of my education took place in the hospital setting. It was a 2 year course and then all being well I would be a qualified X-ray Assistant Practitioner.
Ellie became ill in May 2011. She went into hospital in June and I missed an important exam, but managed to resit that later in the year and muddled along until September looking after a sick child, running a household and doing a full-time job and a shed load of uni work. I passed the first year of the course but it was becoming pretty obvious that working, studying and looking after Ellie was untenable, and the decision was made between myself and my employers that the only realistic option left open to me was to defer uni for a year and start working part-time. After a month or two of this I was signed off sick with emotional exhaustion and eventually I had to admit defeat, Ellie was not getting better and there was no other option than for me to be her full-time carer. Work are keeping my job open for me, I have up to five years to return to my post, and the university still class me as a full-time student and they'll accomodate me to complete the course unless I officially withdraw from it, but that would be burning my bridges when it comes to my job. As long as I stay enrolled as a student I have the chance to do the final year of the course and complete my training and gain employment as an Assistant Practitioner at the hospital.
So this is where our benefits system kicks in yeah? Ellie has been registered disabled at the highest componants of both care and mobilty, the next step for me, as her carer, is to apply for Carer's Allowance, once I am awarded this (a pitiful amount but the label of "carer" is required so....) I can claim Income Support and Housing Benefit. Except I've had my application for Carer's Allowance turned down, twice. The reason for this is because I'm still officially a full-time student, even though I don't attend university and unfortunately there is a good chance I may never be able to finish the course, but while there is still a chance I may finish, I'm not happy to give that up.
So what are my options? If you aren't working but you don't qualify for Income Support then you can apply for Jobseeker's Allowance. But hang on, I already have a job, It's being kept open for me in the hope that one day this nightmare will all be over and I shall return! Rolling up to the Job Centre with a kid in a wheelchair once a fortnight to show proof that I've been actively looking for work while I'm still formally employed by the NHS, well, I doubt that's going to be an acceptible compromise for either myself or the DWP. So what is the only option left open to me?
Basically, in order to claim the benefits I need for us to live off of while I am unable to work, I must officially quit my university course and in doing so I will also lose my job. Maybe in six months, or a year, or perhaps even two or more from now, if (and it's a big if, but I'm keeping my fingers like a Liberal Democrat voter at the last election - double-crossed) Ellie is well enough for me to return to work again, it won't be to the job that should've been waiting for me, the job I'd already dedicated a year of hard study towards, a year of study the local government had funded, and the beginning of my career in the NHS.
So, what with the unemployment figures being as they are, the chances are that instead of having a job, univeristy course and the foundations of a career in Radiography to return to when my daughter is either well again or old enough to manage her own illness, I will probably just be signing off of Income Support and onto Jobseeker's Allowance. It all makes such great sense....
Thursday, 28 June 2012
Tuesday, 26 June 2012
The battle may be won, but when did this become a war?
So we were supposed to be readmitted to our local hospital today, but as luck would have it they had no bed space. Waited all day for a phonecall from her consultant, and when it came it was bittersweet. He listened to what I had to tell him about what had been said at The Royal London and he sounded tired, resigned to the fact that we now had the full force of a group of specialists behind us, and that he would reluctantly have to allow them input in her care. At least that's how I read his response from his voice alone, although I may have been totally wrong.
While talking on the phone to him I realised how much of our communication is non-verbal. When we discuss Ellie's care we all speak with our bodies as much as our voices. The signalling and posturing between us has become somewhat excessive. The telephone conversation took all that away and made communication even harder, you have to concentrate on the words you use so much more intensely, but it made me realise how badly we'd all been behaving in terms of our body language.
Afterwards I just felt sad. I should've been relieved that the confrontation and conflicting ideas between us about Ellie's care, that had been so apparent all last week, had been resolved in a way that was more to our satisfaction than his. But it was a hollow victory, why did this battle even need to take place, surely we all want the same thing? As much as I'm angry with this doctor for not listening to advice from others, others who may be able to provide important input as to how to expedite Ellie's passage to better health, I don't think he wants anything more than to make Ellie better, like the rest of us. The only thing we're really disagreeing on is how to make that happen. I just wish we could all pull together, share knowledge with one another, listen, discuss, keep open-minds, learn from each other without all the conflict.
All this has changed me so much, on the positive side I've become a person that is so much stronger, more self-assured and more confident than I used to be. But the down side is I now see myself as a lot less patient, less objective, and quite often, less pleasant.
While talking on the phone to him I realised how much of our communication is non-verbal. When we discuss Ellie's care we all speak with our bodies as much as our voices. The signalling and posturing between us has become somewhat excessive. The telephone conversation took all that away and made communication even harder, you have to concentrate on the words you use so much more intensely, but it made me realise how badly we'd all been behaving in terms of our body language.
Afterwards I just felt sad. I should've been relieved that the confrontation and conflicting ideas between us about Ellie's care, that had been so apparent all last week, had been resolved in a way that was more to our satisfaction than his. But it was a hollow victory, why did this battle even need to take place, surely we all want the same thing? As much as I'm angry with this doctor for not listening to advice from others, others who may be able to provide important input as to how to expedite Ellie's passage to better health, I don't think he wants anything more than to make Ellie better, like the rest of us. The only thing we're really disagreeing on is how to make that happen. I just wish we could all pull together, share knowledge with one another, listen, discuss, keep open-minds, learn from each other without all the conflict.
All this has changed me so much, on the positive side I've become a person that is so much stronger, more self-assured and more confident than I used to be. But the down side is I now see myself as a lot less patient, less objective, and quite often, less pleasant.
Monday, 25 June 2012
Henceforth, into battle, we go again....
Q: When is healthcare not healthcare.
A: When it's a constant fight to get appropriate treatment.
When acute healthcare is required from our NHS system it's pretty top-notch, and here I only speak from my own experiences. If you have a simple and obvious problem, the wheels turn quickly - here is a problem, there are the immediate and obvious solutions. For instance, when I had appendicitis my symptoms were straightforward classic ones, a few hours from the sudden onset of extreme, severe stomach pain and projectile vomiting, a bit of prodding and poking around my lower right abdomen, and my condition was diagnosed and the solution, an appendicectomy, decided upon. I had a reasonably straighforward and common surgical procedure, but none-the-less one that probably saved my life, the next day and was home within a week. Simple.
Chronic illness is an entirely different matter. What we know now medically compared to 10 years ago is, well, lots more. 10 years from now we'll now lots more still. The body is incredibly complex, and the truth is that however much we already do know, and that's a lot, they is waaaaayyyyy more to find out, and a plenty we may never know. But the medical profession keeps trying, it keeps evolving and learning, it's moving forward. There are more specialists, more studies and research being performed, and more data collated to gather the information required for us to get a clearer picture of what is going on is the bodies of people who are suffering from chronic illness.
I am struggling at the moment to get our consultant at the local hospital here in Brighton to open his mind to the posibility that he might benefit from the input of the doctors that have seen her in the Royal London Hospital's Centre for Digestive Diseases. He works in an acute hospital and had little understanding of the condition that the Royal London doctors say that Ellie is suffering from, and has been dismissive of their specialist knowledge to a degree that to me (although I agree I am by no means an impartial observer on this) seems unprofessional.
When your child becomes ill you expect the hospital and it's staff who are caring for them to be totally focused on doing what is best for that child, open to help and knowledge shared with them by others that may provide a more positive outcome for that child. What you do not expect is decisions to be made by your child's consultant with refusal to accept, or even contemplate, that their diagnosis may (or may not) be entirely accurate without listening to the opinions of others that may have had more experience with children with unusual or rarely seen conditions such as the one Ellie may (or may not) have.
So we find ourselves in conflict with Ellie's consultant here in Brighton. If this whole, horrendous, heart-breaking experience wasn't enough - seeing our daughter suffer constant pain, deteriorating physically and mentally, suffering bouts of dangerous malnutrician, having to bear the constant insinuation that it's all in her head when she desperately wants nothing more to be well again - we have to fight with her doctor to persuade him to consider allowing the input of another department, a specialist one from another hospital, to help us all determine the most appropriate treatment for her.
I don't know what the future holds for Ellie, or the many, many children out there going through similar experiences, but I hope that sceptisism, arrogance and pride amongst those less open to the sharing of knowledge between healthcare staff doesn't leave the NHS as chronically ill as my child has become.
A: When it's a constant fight to get appropriate treatment.
When acute healthcare is required from our NHS system it's pretty top-notch, and here I only speak from my own experiences. If you have a simple and obvious problem, the wheels turn quickly - here is a problem, there are the immediate and obvious solutions. For instance, when I had appendicitis my symptoms were straightforward classic ones, a few hours from the sudden onset of extreme, severe stomach pain and projectile vomiting, a bit of prodding and poking around my lower right abdomen, and my condition was diagnosed and the solution, an appendicectomy, decided upon. I had a reasonably straighforward and common surgical procedure, but none-the-less one that probably saved my life, the next day and was home within a week. Simple.
Chronic illness is an entirely different matter. What we know now medically compared to 10 years ago is, well, lots more. 10 years from now we'll now lots more still. The body is incredibly complex, and the truth is that however much we already do know, and that's a lot, they is waaaaayyyyy more to find out, and a plenty we may never know. But the medical profession keeps trying, it keeps evolving and learning, it's moving forward. There are more specialists, more studies and research being performed, and more data collated to gather the information required for us to get a clearer picture of what is going on is the bodies of people who are suffering from chronic illness.
I am struggling at the moment to get our consultant at the local hospital here in Brighton to open his mind to the posibility that he might benefit from the input of the doctors that have seen her in the Royal London Hospital's Centre for Digestive Diseases. He works in an acute hospital and had little understanding of the condition that the Royal London doctors say that Ellie is suffering from, and has been dismissive of their specialist knowledge to a degree that to me (although I agree I am by no means an impartial observer on this) seems unprofessional.
When your child becomes ill you expect the hospital and it's staff who are caring for them to be totally focused on doing what is best for that child, open to help and knowledge shared with them by others that may provide a more positive outcome for that child. What you do not expect is decisions to be made by your child's consultant with refusal to accept, or even contemplate, that their diagnosis may (or may not) be entirely accurate without listening to the opinions of others that may have had more experience with children with unusual or rarely seen conditions such as the one Ellie may (or may not) have.
So we find ourselves in conflict with Ellie's consultant here in Brighton. If this whole, horrendous, heart-breaking experience wasn't enough - seeing our daughter suffer constant pain, deteriorating physically and mentally, suffering bouts of dangerous malnutrician, having to bear the constant insinuation that it's all in her head when she desperately wants nothing more to be well again - we have to fight with her doctor to persuade him to consider allowing the input of another department, a specialist one from another hospital, to help us all determine the most appropriate treatment for her.
I don't know what the future holds for Ellie, or the many, many children out there going through similar experiences, but I hope that sceptisism, arrogance and pride amongst those less open to the sharing of knowledge between healthcare staff doesn't leave the NHS as chronically ill as my child has become.
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