Driving it home every five years…

So that time has arrived again. The dreaded Disability Living Allowance renewal paperwork landed on my doormat yesterday, and for those unfamiliar with what this means, it’s basically a big booklet that I have to fill in on Jack’s behalf. Although some people who claim this benefit are awarded it for life, Jack has never been that lucky – even though he’s profoundly disabled and not likely to spring out of his wheelchair, dance a jig and start quoting Shakespeare backwards, every 5 years We have to claim again.

Filling in this paperwork, for some reason, always has a knack of sending me into a spiraling depression if I’m not careful. I think its because not only does the paperwork take a good while to complete, the questions repeat themselves occasionally. Because intense concentration is required, I find that the questions (and the answers) are thoroughly absorbed…thus driving home the enormity of the everyday situation we face, and indeed what the future will & won’t bring for Jack. But as I’ve written about before, I do have methods of dealing with those days when everything seems remarkably dark emotionally.

All in all, depressing paperwork aside, life for Jack is ticking along quite nicely. In the last 12 months, I have developed a knack of prioritising appointments and events that are likely to add more stress to our lives. Appointments that are the result of over zealous professionals are dealt with according to their prospective level of stress – and if I don’t deem them worth the stress levels, primarily for Jack, and of course if they are not a medical necessity, they are re-arranged for a later date. This system is working very nicely for us.

So spare a thought for me this week with my Nemesis paperwork. I’m filling it in using 15 minute sessions, which is a trick I learned from The Flylady and her system which you too can learn about here.

Yet Again….

Just a very quick update on my last post. Jacks case went to panel on the 20th Sept. He was once again refused.
So now we are in the position of waiting for a care agency to find someone who is willing to be trained.
I get a feeling this could take a long time.

A New School Year Begins….

First of all I have to apologise for not writing an update sooner than this!  I could swear that I created a post via my iPod and published it here a couple of weeks ago, but for some reason it’s disappeared!  Technology is sometimes not all it’s cracked up to be!

Paul and I had a meeting with the manager from Continuing Healthcare a couple of weeks ago, also Jill, who did Jack’s original assessment – which went on to be refused.

I have to say neither of us were looking forward to this meeting – I had certainly had enough of meetings in the last few months, and the summer holidays had given me some breathing space, so to know that the new school year was going to commence with yet another meeting was not a prospect I relished.

To cut a long story short, we were given an apology at the meeting for the way we have been treated by all the agencies concerned with the one big mess that is Jack’s transport to school, and we were asked if we would consent to Jack’s case going back to panel in the next couple of weeks.  Since the last meeting, letters had been sent and received detailing the severity of Jack’s seizures and in light of this, CHC wanted to see if they could put Jack forward once again.  We agreed.

If Jacks case in unsuccessful again, CHC have proposed that they will pay for a carer to be trained to come at 8am to our house and help me get Jack ready for school, to wait with Jack at home while I take M & H to school and then to travel with Jack on a bus/taxi to and from school.  The carer will be trained how to deal with Jack’s seizures.  The problem is…they are having trouble finding a carer!  The last I heard, the manager was going to contact various Home care agencies to try to source someone, but as she admitted herself, it was going to be no easy task!  Jack’s school was approached too, but they refused to supply someone, and baring in mind that they provided an escort for much of the last school year, I can understand why they have refused.  If  they are seen to be providing escorts for Jack – paid or not – then they will have to be seen to be providing it for anyone else in Jack’s situation.  Totally unfeasible.

At the moment, and until the escort/carer matter is resolved, I am transporting Jack to and from school – as well as my other two children.  The first week was quite stressful, but I have the timings down to pretty much a fine art now.  unfortunately fate let me get settled and organised and then decided that Jack should start having a few seizures here and there!  Fortunately these moments have struck when I have been parked up, but I dread to think what will happen when a seizure occurs while I am stuck in traffic in town…you can just picture the scene can’t you – nose to tail traffic…no where to stop or pull over…no one to administer oxygen to Jack.  It will happen, it’s only a matter of time and I live in dread of that.  But I have the funny feeling that when it does happen, I will suddenly gain the strength to announce to all agencies concerned that I am no longer putting Jack or myself in that situation, which actually is life threatening for Jack, and that I won’t be transporting Jack to school anymore.  Therefore – Jack will no longer be attending school.  I just hope – to be honest I pray, that Jack will pass the next CHC panel, which I believe is this week sometime, and then something will be put in place pretty as soon as possible.  If not, then we still we get a carer as opposed to a nurse, but when that happens will be anybodys guess really……when someone decides they want the job!

So, when I know more, I will post more…but until then please keeps good thoughts coming our way and keep everything crossed that we soon get some good news.

A Resolution….

Reading back over this blog makes me sad. It’s so apparent that I have allowed the comings and goings of the last few months to really bring me down. Red Tape, people who I considered friends at one time, and stupid pointless meetings have all played their part, but I blame myself most for allowing it to happen.

The new school year starts next week. I am making myself a promise that I will no longer allow anyone or anything to bring me down. I will not listen to bullshit, and I will no longer be taken for an idiot or allow myself to be the bullet in anybodys gun.

I really want this blog to be a brighter place – not somewhere I write when life becomes too hard to bear. Or when Jack doesn’t get the services he is entitled to. As long as we have the basics…that’s all we need and I will not be allowing myself to be talked into applying for services where we have to “go to panel”.

In the next year or so I have to make huge decisions about Jacks future, and I intend to save my energy for that.

Carers…

With everything that has happened in the last few months regarding Jack’s transport issues, and the behaviour of the agencies involved in trying to sort the mess out, I felt it was time that I wrote about being a “Carer” as well as a mum, and what this means.

As I have explained over the last few posts, I am in a situation of trying to get either Continuing Healthcare, Social Services, or Transport Planning to provide an escort to help Jack to school.  No one will claim responsibility for funding this venture in any shape way or form.  As a result from the end of this term (2 weeks away), Jack will not have an escort to take him to school from september as school have exercised their right to withdraw the escort they were providing.  It was never their responsibility, and they merely provided one to “help out” until someone did what they are paid to do and HELPED JACK! 

I don’t see how this situation is going to be rectified now before september.  All communication from the various agencies seemed to have ceased totally.  Jack’s school are asking me if I have heard anything.  And I occasionally ask them.  The last news I heard was that the school doctor had accessed Jack again and was writing to Continuing Healthcare giving his opinion on their outcome of Jack’s fits being deemed as manageable and “responsive to current protocol”.  But I have also heard that said doctor is completely snowed under with paperwork, and I do know that End of Life plans that I drew up with him last year have still not been circulated.  The result is that if Jack were to become terminally ill, none of the plans I have put in place would be enforced.  Jack’s life would end quite possibly in a side room on A&E, and not at home or at Rainbows as we wish.

Matthews school were contacted again this morning regarding a key fob so that I could use the school car park there (by Transport Planning this time), Jack would be safe and secure, and I would be able to do all school runs myself, and there would be no need for anyone to have to do their job as I would be doing it for them (she says in angry sarcasm).  They once again have fobbed us off with the “possibility” that a fob could be provided from september IF they feel there is sufficient space in the car park.  Now we have our WAV, this would be the most stress-less option all round.  I would be able to do the school runs, taking Matty and Hannah first and then Jack, but without access to that car park, it cannot be done.

Now I know you already know all of this.  I am repeating myself once again.  But part of being a carer, is repeating yourself again and again and again.  Over and over the same old shit, either to different professionals because there seems to be absolutely no continuity of care in any department, or because I am trying so hard to sort out the problems that are thrown my way, as Jacks carer, day after day, month after month, year in and year out.

Does the Government really think that we need all of this hassle?  We look after Jack better than anyone could.  We love him, we give him his medication, we monitor him 24 hours a day (with no help), we feed him, we time the seizures that cause him to stop breathing, we administer oxygen and diazepam rectally if need be to ease his suffering.  We monitor what goes into his body (and what comes out).  We change incontinence pads, we administer suppositories, we mop up vomit from when he refluxes his food and drink.  We change his bed in the middle of the night if he has wet it – sometimes more than once.  We comfort our other children, and try to reassure them if Jack has a seizure with them around – although they are very good about it.  And we laugh and play like any other “normal family”

What reward do we get for all the extra things we do.  Yes I claim Carers Allowance – a pittance for what we do.  I don’t work, as the amount of time I spend dealing with Jack’s seizures etc, would mean I would have to have the most amazingly understanding boss! 

The government keep making noises about introducing “new deals” for carers.  Such as allowing us a personal budget to organise our loved ones respite stays….giving us freedom of choice they say!  I also received a book through the post announcing that I would be able to go on a course to give me a break from caring!  Yippee I thought.  Then I read the brochure.  I can’t remember the exact courses on offer, but there was something about potting plants, coping with stress, nothing that would boost my non-existent qualifications and enable me to be able to get at least some sort of non menial job when Jack is no longer here….not that I am envisioning any sort of life then anyway….I can’t imagine life without him.  There was nothing in that brochure that boost my self-esteem, self respect, or to let me see myself as anything other that “just a carer”.  Nobody seems to get it. 

I once had a conversation with a person who asked me what I did for a living.  From what I recall she was an assistant in an accountancy office.  I told her I was a Carer.

“Oh, what you really mean is you’re a slacker” she cackled. 

I have to admit I took offence, and in the months following I did have my revenge for what she said – nothing that needs to be discussed here and now, (and I do have to add I am in no way proud of myself) but I hope that she might be a little less smug than what she was back then. 

I have been to my GP before, as at times being a carer does bear a heavy weight.  All they do is offer antidepressants when really all I have ever needed is some form of support – emotionally really with a spot of practical thrown in.  You announce that to the GP and they tell you to take the tablets…and then in a few months they will wean you off them and put you on a very long waiting list for “counselling”.  In the three times that I have been in this position, I have never once been given the counselling.  I have just basically been told to “keep taking the tablets” and in a few months we will see.  I end up weaning myself off the tablets every single time, because I don’t like how they make me feel – I don’t feel myself when I am on them….almost numb emotionally…which is not what I want to be.  I just want some support to help me in caring for my beautiful son…and indeed for the rest of my family.  But unless I count learning how to pot plants as help, I guess I’m not going to get it.

*sigh*…

Further to yesterday…got told today by a school nurse that from september the school won’t provide an escort for Jack anymore. Therefore Jack will more than likely be without transport – period. Now that I expected, and the school aren’t obliged to provide the escort. It was always more of a interim arrangement until Jack got a healthcare package or the transport department provided a trained escort. However, the next sentence I didn’t expect.

“So you will probably have to go without any transport for a couple of weeks, but take it to the papers and force their hand”

I am not a wallflower. I will do what needs to be done. Always have and always will. However I don’t respond well to pressure like this and am now seriously annoyed.

I never started this….why is it now dumped in my lap and left to me to mop up the mess that all these stupid agencies have caused.

Watch this space.

Moving on…

In the last couple of weeks we finally got our WAV!  For those not accustomed to disability “speak”…Wheelchair Accesable Vehicle.  We are finally free to do as we want, when we want, without having to take Jack’s wheelchair to pieces and lift him in and out of the car into (what is now) an outgrown car seat. 

Not only am I totally cock-a-hoop about this, but Jack absolutely loves it!  We have the choice of him being in between his brother and sister or at the back if we are using the extra removable chair.  Jack is currently at the back as I haven’t yet attempted to move the removable chair.  Will probably sort that out when we have sold our other car (which now must be a priority!).  However, to see Jack’s face when he is in the car is wonderful.  He’s no longer cramped into a seat that’s too small, he has tons of room back there and he LOVES it! 

Paul, initially, pulled a few faces.  This car doesn’t have a complex trip computer on as our old car does, and that’s got up his nose a bit….I suspect only because he can no longer spy on whether I have been driving the car “economically”.  He had a few other niggles too, but to be honest I can’t remember what they are because I don’t care!  We have freedom and that’s all that counts!

The school transport issue is still rumbling on.  To be honest the stress of it has caused a lot of problems.  I don’t feel that it’s my problem to sort out – therefore I could be seen as not being proactive enough in the matter….but I tell you what  -  I don’t give a fig.  My son deserves the care that he has been denied.  I suspect that the transport dept are going to try to push the issue of transporting Jack onto me from september.  It would cause a lot less hassle.  However, Matthew and Hannah’s schools won’t give me a parking permit, and I am damn sure I am not parking miles away and leaving Jack in the car unattended. 

The official reason for Jack being refused a Continuing Healthcare Package is that his seizures currently respond to protocol.  Meaning that Stesolid and oxygen work in bringing him out of the seizure.  I find this appalling in the fact that the day that Jack “stops responding to protocol” will mostly likely mean that he will die. 

I could appeal.  Jack’s school wants me to appeal, but as I wasn’t the one who started all of this crap, I am not having anything else to do with it.  The facts are:

a)  Jack is legally entitled to an education.

b) The local authority are obliged to provide transport as stated on his statement of special educational need. 

c) If I transport Jack to and from school, who is going to help me when Jack has a seizure in the car???  I am expected to deal with it myself! Well I have dealt with things by myself for long enough.

I don’t care who resolves this.  Be it Continuing Healthcare, Social Services, Transport or Jack’s school, but I have enough on my plate to deal with without being actively involved in arguing over red tape!

And on that note – it’s time to get tea on the go!

xxxx

The Week From Hell…..

Oh where oh where do I start with this entry….

Basically the whole week off was an utter disaster which culminated with Jack being taken to hospital on friday afternoon.  I am not really in the mood for spilling all on here just yet, but all I will say is that there is an ongoing “urology” problem with Jack that is supposed to be resolved with surgery.  When the problem first occurred with Jack last year he was taken into hospital and I was told he would be put on the waiting list for surgery.  Six to eight weeks max.  Well we are now in March…the problem has occurred again (funnily enough whilst he is not in my care…but I will reserve judgement on that right now until I have had meetings with all involved).   It turns out Jack was never put on the waiting list. 

Now while Jack was on the children’s ward (for about 4 hours in total)  it turns out that apart from the fact that Jack wasn’t actually put on the waiting list for surgery (and oh yes there will be an official complaint being made), I also discovered that the local children’s ward have taken to employing nurses that have the bedside manner of…well…no words to describe the beside manner cos there is none with this nurse I am about to talk about!  The urologist refused to visit Jack on the ward, the ward doctor didn’t even examine the affected area – just listened to his chest and when I went to the nurses station to ask what was actually going on I was met by blank expressions….at which point I have to admit I did blow a fuse – but only to the point of telling them that what was going on was not acceptable – and I swear that’s all!  One of the nurses (We’ll refer to her as Nurse B….you can all insert whatever word u want for the B) looked up – but didn’t actually look me in the face and snorted

“There’s no need to get aggressive about it is there?” (add your own patronising tone at this point)

There was a two second silence after which I announced in no uncertain terms that I wasn’t actually being aggressive by my own standards, I was actually extremely annoyed that my son was being sidelined and nothing constructive was being done!  All nurse B did was announce that I should just go through the “normal channels like everyone else – visit the GP”.  She didn’t seem interested in the fact that the last Urologist Jack saw told me in no uncertain terms that what was happening with Jack is classed as a medical emergency and he should come straight to hospital.  Also if Nurse B had half the sense she was born with (or if she’d even bothered to look at the problem) she would have known that any GP would have sent him straight to the hospital anyway!

Erm….Jack has open access on that ward.  Now it also came to light during that conversation that Jack should not have been admitted via open door policy on this occasion and should have gone to A&E.  Well why didn’t anyone tell me that when I rang up??????? 

By this point I was on the point of losing it, and I don’t mind admitting that I did go on a bit….not aggressively…but in the way that any parent of a special needs child who is not getting the care that he should would go on.  The other nurse who was there is one that I have known a long time – and she did what that other silly cow should have done….tried to explain what was happening and what they would try to do…not snort at me in contempt.  The ward doctor also said she would consult her senior to come and see Jack and see if they could force a urologist to come and see what had happened to Jack.  I have to say – they were really good….but unfortunately Nurse B had just sent me off the edge. 

They episode ended with me sobbing next to Jacks bed and Paul arriving somewhat irrately on the ward….I had let him know what was going on.  As soon as he arrived I left the ward cos I just needed to get out of there….I don’t like the fact that I ended up in distress.  I don’t usually let anyone get to me like that, but it was just the topper of the week for me.

While I was away, Paul managed to rectify the “medical” problem and then went to the desk and basically in no uncertain terms told the staff we were taking Jack home, and where was Jack on the list for his op….that’s when we found out urology hadn’t even bothered to put him on the list.  When I came back to the ward Jack was sitting up in his wheelchair ready to go home.  Jack is now safe and sound at home.

For the last 48 hours I have been in a bad way.  A lot of people have a lot to answer for in the next few days and I am just gathering my strength to deal with it.  Paul will be taking an active part in any meetings that happen…and he doesn’t deal with fools lightly.  The Children’s ward are aware of how unhappy he is, Respite will also be getting a call from him in the next few days too.  They were informed that Jack was in hospital – funnily enough they have gone very quiet.

As for Nurse B…..I am considering making a complaint about her, but I am sure she would do her best to probably get me banned from the ward if she considers me aggressive.  However, I know the ward manager quite well and she is very approachable, so I will give it a bit more thought and then decide.  I don’t like making decisions based on how angry I am, and I need to calm down a bit first I think!  Nice Nurse N (the one who has known us for years) did say she would talk to her and tell her how much stress I have been under, but to be honest I don’t give a damn.  Her attitude sucks….I pity anyone who has to deal with her.

I really really hope one day she is in the position where she has to deal with a nurse  like herself when one of her loved ones is in a vulnerable position.  Seriously….I have never wished that on anyone before….but for her….full force. 

Jack, as I said, is home.  He’s fine.  We took the kids out to a local country park today, it was a nice break for us all.  I haven’t been in the best of moods with everything that has gone on….but I hope that everything will settle down soon.  As for Jack having future respite – I don’t know.  How many meetings and care plans does there have to be?  What good are they if no one is going to stick to them (and I am not just talking about respite now – but all agencies concerned with Jack).  I sometimes feel we are banging our heads against a brick wall….I am so tired of it all.