Wednesday, September 29th 2010

Return to St Michaels Hospice

Well I’m back again barely 2 months after I was discharged! Those awfully nice people from Southern Country Ambulance Service turned up shortly before 11 AM this morning to take me to the hospice. And because it wasn’t a NHS ambulance, and thus not constrained by the same regulations, Tim and Tom were quite happy to let me take my wheelchair. In fact I was able to travel to the hospice sitting in my wheelchair rather than lying flat on my back on a stretcher as I’m normally forced to do (a far more comfortable experience I can assure you). This gave me an opportunity to stare out of the large panoramic windows and view the neighbouring outside world, something that had become a gradually receding memory. In fact it was an opportunity to update my memory picture of a once familiar route as I noted buildings that were once under construction now stood completed, out-of-town retail units under new ownership, and of course the seasonal changes in the trees and shrubs along the way.

St Michaels is in the throes of an upgrade and modernisation programme at the moment courtesy of a £280k Department of Health grant and so as you might expect there is a lot of activity currently going on and beds are at something of a premium. I was therefore overjoyed when I was told that a bed had been reserved for me (as opposed to having to stay at the hospital on an emergency basis). I was even more surprised when I discovered that it was exactly the same room as I had last time, only this time it had already been upgraded and had a light and airy feel about it. The old bay window had been ripped out and French doors and a balcony had been put in their place, the floor was now laminated wood, there was a ceiling track hoist (unfortunately not yet working), air conditioning, and even a brand-new never slept in bed.

As before the folks at the hospice have gone out of their way to make me feel welcome and comfortable. Bernie, their very friendly and helpful IT manager dropped by this afternoon to say hi and to set up my computer and all the hardware needed to communicate with it. I’m really grateful that they allow me to have a computer because without it I simply don’t know what I would do all day. For people in situations like mine a computer is a lifeline.

Well it’s the end of the day now and for the first time in a couple of weeks I’m feeling relatively stress free. I guess now I’m here the next question of course is how do we proceed and sort out the mess my care agency have left me in? I have a feeling that tomorrow might provide me with some of the answers…

Before signing off I’d like to say thank you to Ann and Debbie for taking care of me this morning and bringing all my toys, clothes and other paraphernalia to the hospice! My meerkat friend is already the centre of attention with the night staff!

Mark

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Tuesday, September 28th 2010

Emergency measures

I’ve been inundated with worry lately and generally feeling very low. As mentioned previously my care package as it is now will no longer be supported after this week. Obviously because of the extent of my disabilities I cannot be left on my own, and as my care manager has not had sufficient time to make alternative arrangements we are having to resort to emergency measures.

Yesterday afternoon my care manager and a member of St Michaels Hospice called round to discuss re-admitting me to the hospice on a short-term basis whilst they try to figure out what to do with me. The hospice is normally only really geared for short-term stays of around 2 to 3 weeks unless health needs deteriorate. So this appears to be roughly the time scale we are looking at to get things sorted out. For now though the immediate plan is to admit me tomorrow (Wednesday) morning.

As much as I like the hospice (and it is indeed a wonderful place) I would much rather stay in my own home at this time as I have only just recently left the hospice. Unfortunately they do not have the resources in their Hospice at Home team to offer me the level of support I would need to be able to stay in my own home. But of course the hospice is an excellent second choice, and I know without a shadow of a doubt that I will be well looked after so at least it is a worry off my mind, although what happens afterwards is anyone’s guess at the moment.

Did you notice in the first paragraph I mentioned my care package ‘as it is now’? The reason for that is because my care agency has agreed to continue to support me in the mornings whilst I am at the hospice. The reasons are twofold: the first is to lighten the load on the hospice staff, and the second is to aid in my transition to a new package. So the good news here is that my regular morning carers will continue to take care of me at least for a few more weeks. Unfortunately for everyone else it will soon be time to say goodbye.

This time I shall be going to the hospice more prepared than I was last time and fortunately I shall be taking my new wheelchair so at least I’ll have something comfortable to sit in all day. Unfortunately however I may not get it straight away as NHS ambulance staff are not allowed to move wheelchairs down flights of stairs, apparently. I may have to wait until the following day. Oh yes, I’m also taking my laptop computer again so hopefully I’ll be able to post frequent updates as the situation changes.

So for now I’ll sign off but just before I do I’ll leave you with a few photos that were taken over the weekend. The first few are with Suja, the delightful young Nepalese girl who created a big impression with me recently with her pleasant personality and hard-working proactive approach to care. As for the last picture it is somehow fitting that it should be of ever-loyal ever-reliable Ann. Tell you something, if I’d had a few more people like her in my care package we would never have had a problem. Sigh…

With the lovely Suja. 25th September 2010

With Suja. 26th September 2010

With Suja and one of the guards who has muscled in on the action! :-). 26th September 2010

With ever-loyal ever-reliable Ann. 26th September 2010

Mark

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Friday, September 24th 2010

More brickwork

Another photo post, this time showing the remaining exterior brickwork in various stages throughout the early part of the week.

Once again a big thank you goes to Debbie for taking all the photos.

Final exterior brickwork underway. 20th September 2010

Final exterior brickwork underway. 20th September 2010

Final exterior brickwork underway. 20th September 2010

Side elevation of completed brickwork. 21st September 2010

Bathroom end elevation of completed brickwork. 22nd September 2010

Bedroom end elevation of completed brickwork. 22nd September 2010

Awaiting tiling. 22nd September 2010

Mark

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Saturday, September 18th 2010

Up up on the roof

Nothing much to say this time as I think the photos taken during this week speak for themselves. Suffice it to say that with the good weather we’ve been having my friendly builders have been able to crack on with the timber work for the roof. Progress has been quite rapid despite there only being two people working on it. It’s also been quite noisy, and despite being about as far away from it as I can get, I’ve still not been able to escape the effects of drilling into the side of the house when the noise level was such that it effectively shut down my speech recognition software.

A big thank you goes to Debbie who not only was kind enough to take the photos for me, but also managed to capture a few ‘action shots’. I think she’s getting rather good with my camera, don’t you?

Roof for side extension under construction. 15th September 2010

View through the bathroom window showing the roof for side extension under construction. 15th September 2010

Side view showing Roof for side extension under construction. 15th September 2010

Another close-up of the timber work for the roof of the side extension under construction. 15th September 2010

View from what will be the bathroom showing the roof under construction. 15th September 2010

Front view showing roof for side extension under construction. 15th September 2010

Side view of new extension. 17th September 2010

Side view of new extension. 17th September 2010

View from what will be the bedroom end of the new extension. 17th September 2010

View from the bathroom end of the new extension. 17th September 2010

Mark

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Tuesday, September 14th 2010

It never rains…

I had a meeting with my care manager this morning as I quite often do. Like usual I assumed it would be to discuss the care package, talk about any problems and concerns I had, and to update me on any changes coming my way. But instead she opened with the line “I’m afraid I’ve got some very bad news”…

My care agency are pulling out of my care package at the end of the month! I now have just over two weeks to make alternative arrangements! For a moment I was left stunned at the completely unexpected hammer blow. Why are they doing this? Because they say they can no longer support it. Why? Apparently it’s because they are unable to provide the right people. I’m hearing, through other channels, that it’s because all the new people that are being sent to work with me lately are proving unsuitable (and that’s being kind), and all the people I have identified (and there are at least half a dozen) as suitable and competent either don’t want to work with me (because they don’t like the hours being offered) or are unable to because the office won’t move them from existing clients or they don’t have enough spare capacity. Hence we’ve arrived at the situation we are in now.

The above is of course a simplification of a situation that has been steadily brewing for the past two years. When I first had a need for professional care in October 2008 I was already thinking ahead to a time when I would be heavily disabled and therefore completely dependent on others. So one of the main objectives was to try and build a care package consisting of a group of reliable, competent and loyal carers who would stay with me throughout the course of the disease. I also wanted people who would work well with each other and as a team so that they would be prepared to cover each other in times of holiday or sickness. What I was trying to avoid was having major upheavals in the care team supporting me during the later stages of the disease. By this time I was hoping that all the problems would have been ironed out and everything related to my care would run smoothly. How naive I was to think that there was stability in the care sector!

To be honest I’ve been under a lot of stress lately even before today because I was aware that one of my main carers was leaving soon and it was hard to see how we would replace her because of her range of skills. She also had a willingness to work not only her own hours but to fill in and do any hours that nobody else was available for. In fact it is because of her that the package has been kept running relatively smoothly all year otherwise we would have reached this point many months ago. She is a key and critical member of the team. In fact I have often remarked to my care manager that there are essentially three pillars holding my care package in place. If any of those pillars were removed we would be in serious danger of the whole package collapsing. The fact that this is exactly what appears to have happened shows how deficient the management of the care agency have been in allowing the situation to develop.

The trouble is for every person like Ann, Debbie, Francesca, Alison, Kim and Alli that have looked after me, there have been a dozen or more that have come through my door that are either clueless, incompetent, lazy, dangerous, lacking in imagination or seemingly only able to work to a predefined script and hopeless when circumstances change. It certainly feels at times that there is something of a lottery in terms of who turns up: will it be someone experienced, palliative care trained, or will it be someone that has just finished working in a department store? That may not sound a particularly nice thing to say but if you were in my shoes you would understand.

We’ve been trying to get more skilled people into the package for months without success. Even more frustrating is when we do identify them and nothing gets done. For example early in the year Debbie identified a young Nepalese girl as being absolutely perfect for this package. She’d just started with them and was already getting good feedback from clients but for some reason was never put into this package until a few weeks ago as emergency cover. She was the girl that I previously commented on, and like Debbie I immediately saw her potential as an excellent carer. Since then I’ve tried and failed to get her added to the team. I am convinced that had the agency taken this and other requests about personnel more seriously we could have easily averted the situation I am now in.

What concerns me now is that I am being told that because of the cost and complexity of my package it is very unlikely that Continuing Care would fund another one like it. I am being told in quite strong terms that we need to start looking at live-in care which is something that I have fought long and hard against all along. It doesn’t work for everybody and I feel certain that it wouldn’t work for me because of the private nature of the person that I am. We cannot just push people together and expect them to get on, and I never want to feel uncomfortable or unhappy in my own home as that is all I have left me. It also fails to give me the continuity I desire as live-in carers rotate regularly.

The problem with having Continuing Care (which is care paid for by the NHS and is not means tested, but is only awarded if the need is health-related) is that your care has to be delivered by an approved agency. In other words the client has very little say in who provides their care. This is different to having something like Direct Payments in which you get a pot of money from the local council (who will means test you and is not relevant in my case anyway as my needs are health-related) to go out and buy your own care. So in other words I will have very little say in what is going to happen next and to make matters worse I am being told by my care manager that even if we could get funding for a similar package to what I have now I would be looking at about eight new people. On top of this she is telling me that she is having lots of problems just getting three calls a day covered regularly for other clients with the two agencies on the approved list.

I feel like I am caught between a rock and a hard place. On one hand I hate the idea of having an endless stream of live-in carers (plus additional staff from local agencies to handle the double ups) who come from foreign lands, stay for a few months and are then replaced with another one, whilst on the other hand I am fearful of going to another agency for day care and getting exactly the same kind of problems as I’m getting now. I feel like I’m trapped in a care system that neither cares nor works properly.

When something like this happens it will affect people in different ways depending on their own personal circumstances. If I was not living on my own then sudden changes in my care package would not have such a deep impact as I would be cushioned to some extent by those around me. But of course I’m not in that situation and so I’m absolutely dreading losing all my regular carers in a couple of week’s time who have by now grown to anticipate my needs to such an extent that everything just works very smoothly. In the time that we have known each other we have all become friends and I think some of this can be witnessed in the photos that I have posted of our evening meals out together. Although it is true that we’ve not been fully up to strength and could have done with at least one more fully versatile team member, those that have been here have given me a degree of stability that I need. It’s going to be heartbreaking saying goodbye and right now I don’t even want to think about it.

At the moment I’m feeling completely crushed and seriously depressed. What else can go wrong for goodness sake? I can’t actually print what I think about an agency that would leave a terminally ill, highly disabled and completely vulnerable person in this terrible situation and at such a late stage in the disease because I’m not like that. But I’m sure you can imagine for yourselves! Can you imagine a hospice saying ‘we don’t want to do your care anymore’? All the worry and stress this has brought on has caused my appetite to collapse. Everything I had set out to achieve two years ago is now in ruins and it is starting to feel like my premonition of spending my last days in the company of near strangers is starting to come true. On days like this I just feel like giving up.

Mark

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Construction Tail

Are you all sitting comfortably? Good, then I shall begin. I have a tale to tell…

All was quiet in the guard room... "Hey Mr sleepyhead, it's time to get up. Come on, wakey-wakey rise and shine. You've a big day ahead... and a very important visitor!"

Oh no, it's the camp Kommandant who's turned up unannounced to make a surprise inspection of the new high security wing. He’s far from happy to find one of his guards sunbathing instead of patrolling the perimeter. This is one guy you definitely don't want to mess with! I wouldn't want to be in your paw-shoes Mr guard!

The guard, with paws trembling, stands briskly to attention fearful of the punishment the camp Kommandant is sure to dish out. "You only have yourself to blame Mr guard. I did try to warn you that you had a special visitor arriving. Let's just hope he doesn't find out that it was YOU that was responsible for the last three jailbreaks!"

You've got one chance, and one chance only to impress me today, says the camp Kommandant with an expressionless face. "All I can say is you had better not mess this one up Mr guard. You know what he's like when he gets really angry. We never did find that brother of yours..."

With assistance from the guard the camp Kommandant slowly descends into the new high security wing. Let's just hope he doesn't find the secret tunnel my carers have been busy working on!

Oh no, they've found the exit to our escape tunnel. All that digging with teaspoons for nothing! He's only been here five minutes and already he's thwarted my plans. This Kommandant guy sure makes my regular guards look like a bunch of amateurs. I hope he doesn't have any relatives!

Eager to impress, the guard shows the camp Kommandant the new patent pending 'anti-jailbreak' electric sponge fitted between the walls. "I'd be careful where you place your foot, Mr guard. I do believe the Kommandant is holding the switch!"

They're up to something. The Kommandant wants some alterations made to the flooring. Couldn't quite hear what he was whispering but did catch the word 'mines' mentioned. Gulp!

The guard, keen to show initiative (and recover some brownie points) points out a suitable location for the watchtower. Oh no, the Kommandant has spotted us! Quick, run for it.

I'm not really sure what they're up to here. We did try asking but they just giggled and ran away!

Written, directed and edited by Mark

Shot on location (and so was the director)

No meerkats were harmed during the making of this photo story

 

This photo story has received a certificate rating of U

(universal, suitable for all)

May contain scenes of gross cuteness

*

A special thank you goes to Debbie who took the photos and has proved once and for all that she is as barmy as I am smile_regular.

Mark

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Wednesday, September 8th 2010

Dimensional discrepancies

Just a few more photos to share of the progress made during the first half of this week. Visually it doesn’t look a lot different although you can now see that we have the lintels in place. The next step will be to start work on the roof and I’m told, weather permitting, that this should commence later in the week. I’ll breathe a sigh of relief when the outside work is done as we’ll no longer be dependent on the weather and progress then should hopefully be swift.

A big thank you once again goes to Debbie who was kind enough to take all the photos you see below.

Interior view of the extension from the bathroom window. 8th September 2010

Interior view of the extension from the bedroom window. 8th September 2010

Rear view of the extension and newly fitted lintel. 8th September 2010

End view of extension and newly fitted lintels. 8th September 2010

House and extension. 8th September 2010

I had a bit of a fright today when Angelina, a housing officer with the council, called round to do an inspection on the building works. As I’ve mentioned before the whole project is being done under a Disabled Facilities Grant with a means tested contribution from me. So every time the builders hit a milestone a representative from the council comes to do an inspection and verify that the work has actually been done before arranging a stage payment to the builders. Today they informed Angelina that the width of the extension would be several inches narrower than the drawings. Why? Because whoever produced the drawing did not take into account local highway laws regarding proximity of buildings in relation to public footpaths and roads. Consequently to comply with these laws the builders had to build the wall further away from the pavement. Now a few inches might not seem much but in the confines of an already narrow extension it is going to give us some problems with regards to access around the bed. To maximise working space it had been my intention to position the bed crossways to the extension. But the space we are now left with at the end of the bed is going to be quite narrow. A solution being proposed is that we take out the outer bricks on the side of the house so that we are left with a kind of alcove that the bed could be pushed into to regain the few extra inches needed. But there was doubt over whether this extra work would be covered under the terms of the grant. Angelina would need to discuss it with the grant officer. Fortunately this particular story has had a good ending as I received an e-mail late in the afternoon to confirm that the cost of the additional work had been granted approval.

This has been the third discrepancy with the drawings. The first was discovering that the original position of the extension meant that the corner of the bathroom would encroach onto the footpath. This required shifting the whole extension forward by about 6 inches. But as the front of the extension cannot be flush with the original structure we are going to lose a few inches on the interior dimensions. The second discrepancy was discovering that the architect had made an incorrect assumption regarding the drainage which is why I am now having half my back lawn dug up! I’m keeping my fingers firmly crossed that there will be no more of these surprises fingerscrossed.

Mark

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