Saturday, 25th May, 2024 [Day 1531]

Meg and I spent a reasonable night last night in our new sleeping arrangements with Meg in her hospital bed and with myself sleeping beside her in my camp bed arrangement. I am actually very comfortable in this new mode although I do tend to wake up in the middle of the night with my blanket on the floor. But after the carers had got Meg up and we had breakfasted, we both felt in a reasonable shape to see if we could venture out in a wheelchair, the first time since the almost calamitous experience of last Tuesday. This time, though, I was determined that we should make some adjustments to ensure that we had a better trip out. Firstly, I decided that we should use the slightly smaller wheelchair that we traditionally used to keep in the boot of the car and to which Meg is well adjusted. I had put the footrests into a position one notch higher so that we had a little more ground clearance than on the other wheelchair. I also ensured that we do not use the support cushion that caused us so many problems on our last trip out when Meg tended to slip forward and fail to maintain a proper seating position within the chair. I also made a type of thigh support which was a small cushion put into a pillow case and used to put under Meg’s thighs in such a way that her body would be inclined towards the back of the chair rather than the front of the chair. But the principal adaptation I made utilised some ankle straps which I had bought on the web. These are elasticated type strappings that are designed to wrap above below either the knee or the ankle to provide additional support for I imagine people playing a sport where they are likely to strain ankles or knees. I utilised these straps to wrap around Meg’s ankles and attach them firmly to the footrest uprights to ensure that her feet stayed in position and did not slip either off or forwards. The combination of all of these factors worked exceptionally well, probably in combination with each other and the net result was that we managed to transport Meg up and down the hill with the minimum of trouble and no untoward incidents. We had coffee with two of our Waitrose friends, one of whom I intended to make a present of the last piece of my birthday chocolate cake which I had promised her but forgot at the last moment to take with us. But it was a beautiful day and we enjoyed our little trip up and down the hill, having been inside for days not least because of the intense rain of the last day or so. We took the opportunity to buy some supplies in store and when we got back Meg’s carers had actually been awaiting our return for a couple of minutes.

This afternoon was the FA Cup Final between Manchester City and Manchester United. When I was at my boarding school in Bolton, in Lancashire the pupils as a whole divided their football loyalties between Bolton Wanderers and Manchester United. In fact, these two teams met each other in the Cup Final in 1958 which Bolton went on to win. This match is regarded as one of the best ten FA Cup Finals of all time and is noteworthy for the fact that Manchester United had fought their way back after many of the team members were killed outright or severely injured in the Munich air disaster of February, 1958 in which the aircraft carrying the Manchester United team crashed on its third attempt to take off from an ice-laden airport in Munich. But when I was at University, the digs that I occupied were within half a mile of the old Manchester City ground of Maine Road. At that time, Manchester United carried all before them and Manchester City were the decided underdogs so I switched allegiance to the team around the corner. We occasionally watched sparsely attended mid-week matches, sometimes in European competitions, as getting to the ground was easy and admittance quite cheap. Today, though, I am supporting Manchester United because Manchester City have won the League and been so successful this season and Manchester United have started very much the underdogs. But they scored two good goals in the first half, conceded a goal to City in the last few minutes but ran out as deserved winners with a score of 2:1. I am not the greatest of football fans but as well as the treat today, tomorrow we shall see Leeds play Southampton to see which team will return to the Premier League next season. I shall certainly be supporting Leeds tomorrow and the match may well be as tense a match as the Cup Final itself.

The interesting news politically in the last 24 hours is to to witness various Tory ‘big beasts’ who have decided not to contest the forthcoming election. In particular Michael Gove who has been one of the more competent performers in the last few governments and held a variety of ministerial positions. Also Andrea Leadsom, one time Leader of the Commons has also decided to quit. One wonders whether these politicians actually have an eye on the House of Lords because retiring ministers who have devoted a lot of their political life to the House of Commons often end their days in the House of Lords. Today, Keir Starmer has indicated that he intends to lower the voting age to 16 from the present 18 so it is possible that this may give the Labour party some slight electoral advantages in the years to come. Having said that, the Tories thought that they were being very smart when they legislated for voter ID to be compulsory for voting in elections and this may well hand the Tories the seats where the contests are particularly tight. It could be that the Tories unintentionally disenfranchised some of their natural and older supporters when they introduced the new voter ID rules. There have also been several boundary changes this year which may make the results of particular electoral contests a little more difficult to predict as the parliamentary constituencies are adjusted to better reflect the geographical spread of the electorate. After Rishi Sunak, the Prime Minister, announced the election when it was pouring with rain, one particularly amusing newspaper headline has been to call our centre of government ‘Drowning Street’ which seems more than usually appropriate.

Continue Reading

Friday, 24th May, 2024 [Day 1530]

Last night after Meg had been put to bed, I carried on with the assembly of the screen I purchased recently. The assembly requires one to stretch the linen panels and then to loop them over a top bar such they ‘velcro’ together. But as it stands, I think the panels have been cut about a centimetre too short which makes the assembly very difficult. Eventually with panels 2-6 I hit on the expedient of bending the receiving bar in the required direction which is certainly not what the instructions would suggest. Tonight, I will do the final clipping together and, perhaps, some last minute adjustments before the screen gets deployed. My policy of sleeping on a camp bed besides Meg’s hospital bed received a degree of vindication last night. As I was getting myself to bed, Meg woke up in a distress and agitated condition but I am pleased to say that with the aid of our weighted blanket and my hand in a proximate location to hold hers, I managed to get her into a sufficiently calm state to get back to sleep. This morning, though, I was not best pleased as the care agency phoned about three minutes before our carers were due to arrive asking if I could take the place of Carer No. 2 who had not turned up for work. Meg is without doubt a two handed job, particularly first thing in the morning when she receives a body wash so I really was needed to lend a hand which added to my tiredness level. Most of the morning was devoted to our watching the third day of evidence given by Paula Vennells, the CEO of the Post Office who was in charge at the height of the scandal. Today, her last day of evidence, she was being examined by the barristers representing the wronged postmasters themselves and they were ruthless in exposing the CEO’s prevarications, obfuscations and denials. A major thrust of the questioning this morning was trying to establish that surely she must have known about bugs and system instabilities in the Horizon computer system despite which postmasters were prosecuted and some imprisoned. Paula Vennell’s defence typically took the form of ‘well I had knowledge of two computer bugs but I was told that they had been fixed and a third was being addressed’ and so evidence of a smoking gun was hard to find. The barristers were incredulous that the CEO of an organisation did not ask the relevant questions as the scandal came to light and it does appear that as well as failing to take action on addressing the wrongful prosecutions of the sub postmasters, a lot of effort seemed to be directed at minimising any reputational damage to the Post Office. One revelation that crept out at the end of the morning was the fact that she had removed a critical reference to past Horizon problems from the prospectus as the Post Office was being prepared for privatisation. She even boasted that she had ‘earned her corn’ that day when the prospectus had been successfully doctored – if this had been picked up upon, then the whole privatisation could have been blasted out of the water. Paula Vennell’s whole defence was to say that she trusted the advice of experts and other senior managers in the Post Office and perhaps, in retrospect, had been too trusting of the advice received. The barristers could not quite believe that with all kinds of damning evidence building up over the years, she had not as CEO ever really asked the deep questions of what was going on in the organisation of which she was the CEO and asked, perhaps in the dictum of Winston Churchill that we should have ‘action this day’ But to be scrupulously fair to Paula Vennells, I wonder whether in modern organisations there might not be a feeling, particularly with technical computer questions, of not wanting to bother the CEO with problems that are encountered and there might be a desire at managerial level to solve the problems themselves and not to ‘bother’ the CEO with it. Eventually, some of the data coming out of this investigation might provide case studies and insights into how large corporations in both the public and the private sector actually operate and, in particular, deploy all kinds of manoeuvre to avoid reputational damage.

The election campaign is really in full swing with the party leaders jetting around the country even the campaign is only a day or so old. It is reported today that a total 75 Tory MP’s are not going to contest their seats which, at a rough guess, is about one fifth of the parliamentary party. It is also being suggested that Boris Johnson might be roped in to campaign for the Tories which, to some, might appear an act of desperation. The role of Nigel Farage, ex-UKIP leader, might prove to be very interesting. After several attempts to capture a Westminster seat he had declined to put himself forward as a candidate but may well be in full campaigning mode, supporting ‘Reform’ (new name for UKIP) candidates in various parts of the country. In this role, might he do even more damage to the Tories than would be the case if he confined himself to a single constituency which he was attempting to win? Interestingly enough, the Tories are going heavily on immigration as they probably think that they can capitalise on the Rwanda flights which have yet to take off but is still their declared policy were they win the election. To my mind, this is the Tories always playing the ‘race’ card when their backs are against the wall. It is ironic that actually the present Tory government have presided over an enormous increase in legal migration i.e. immigration for which a visa has been offered and a job is in prospect. More overseas staff arrived to work across the sector. But more may be needed. Last year, there were around 150,000 vacancies in England, and recruiting British workers remains difficult. Of all of those visas, more than 146,000 went to health and social care workers, another 203,000 went to their defendants. Care home owners are reporting that without recent immigration, their businesses would not be viable and approximately 40% of their staff are recruited from overseas. So the whole issue of migrants arriving by boat at about 40,000 per year is small compared with legal migration which is of the order of 700,000 per year.

Continue Reading

Thursday, 23rd May, 2024 [Day 1529]

Last night was my first night on my newly delivered little camp bed which I put besides Meg’s hospital bed so I am available if Meg were to wake up during the night in a distressed state. I am pleased to say that Meg got off to sleep much more rapidly last night and my own little arrangement with a camp bed and the folding mattress on it seemed to work as I hoped that it would. I woke up just after six this morning and started on my new routine of clearing away all of my bedding and getting things prepared for the care workers when they arrived at 8.00am this morning. Last night, I started to put together the elements of a screen which I had bought on eBay – as you might expect these days, it was basically a collection of metal poles which slot or screw into each other and this provides a type of seating for the fabric panels which constitute the screen itself. I was a little dismayed to get one of those sheets with just 5-6 line drawings on it which is all you get by way of instructions these days. I think I have to construct about five panels and then finally clip them all together. I have only completed the first panel last night and this morning and so far, the fabric panel seems very tight and difficult to stretch onto its mountings but I am hopeful that the remaining four may prove a little easier. I am doing this little job quite slowly because if one were to rush the job, I might end up with an assembly which fails to work as intended.

After we had breakfasted, a carer came to sit with Meg whilst I went off to my weekly shopping. This is the first time that this has worked for weeks because this time last week we were visiting the hospital and the Thursday before that, something else had happened. I went to the smaller Aldi store that I use regularly and as I entered the store, I caught sight of some church friends of ours where I know that the husband is suffering from dementia – but a different pattern of symptoms to those that affect Meg. So our friend and I embraced each other briefly but we had no time to stop and exchange pleasantries because we were both in the same boat of having to dash round the store as fast as we could and then get back to our respective spouses as soon as we could. Fortunately, we both recognised this need in each other and so carried on in our various ways scurrying round the store trying to get the entire shopping trip to less than an hour if this is possible. When I arrive home with multiple bags off shopping, I always marvel how two little people such as Meg and myself consume such volumes of stuff, given that we try to live quite modest lifestyles.

As might be anticipated, the media have gone completely overboard after the news that a general Election has been called for July 4th with is six weeks today. In the very short term, there is all kinds of vital ongoing legislation stuck in the House of Commons and this has to be rushed through, without any proper scrutiny in the next day or so. The whips from the main parties are in close consultation with each other as always happens at the end of a Parliament. It has to be decided which legislation has to go through probably unopposed and with no proper scrutiny, which has to be abandoned and which has to be argued over. As I write, it looks as though the Finance bill giving effect to the budget measures has to be rushed through but the Crime and Justice Bill, as well as a Football Regulation bill will have to be abandoned. There has also been a sort of belated recognition by Rishi Sunak that the deportation of asylum seekers to Rwanda might not happen before the election. But personally, I would not be surprised if the Tories try to get one flight off to Rwanda even if there is only person on it and the day before electiorate vote to try to sway a few votes. The reaction of the Labour party to a General Election is generally one of a buoyant optimism where many Tories are dismayed and really wanted to hang on to their seats and their salaries as long as possible. After Parliament is prorogued, MP’s as such no longer exist as there are only ‘candidates’. Already two junior ministers have indicated that they will not be contesting their seats in the election. The reasoning is quite straight forward. It is one thing to be an MP when one’s party has been in power as the Tories have been for the past fourteen years. But being an Opposition MP with years of hard grind in front of one and no perks and ‘freebies’ such as overseas trips are not everybody’s cup of tea. Also, I think it is recognised that the Labour Party might just win by a landslide and it takes another landslide in the opposite direction for a party to lose power. So many Tories feel that they may be our of power for two Parliaments or ten years and so many will attempt to leave politics and enjoy lucrative jobs whilst they still have some credibility and marketability. The results of the election is not really in doubt given that the Labour party has had a 20% lead for some years and the country as a while is crying out for a change. What I think is going to be the really interesting part of this election is to see which prominent Tories will lose their seats. One would have thought that a majority of 15.000 would have been quite healthy but judging by the recent opinion polls than any Tory MP with a majority of less than 15,000 might be feeling very vulnerable.The electorate has become a lot more sophisticated and although it is denied at the centre, on the ground there are instances of tactical voting designed to eject sitting, mainly Tory MPs. This is particularly so in the more prosperous parts of the South of England where the Labour party knows it cannot win but is willing to give tacit support to the Liberal Democrat who has a much better chance of beating the incumbent MP. It looks as though Jeremy Hunt, the present Chancellor, might be vulnerable to such a strategy for example.

Continue Reading

Wednesday, 22nd May, 2024 [Day 1528]

Last night turned out to be a fairly horrendous evening which had some implications for today. The carers put Meg to bed by 7.30, and she should have been ready to sleep not having had a sleep during the day, as I would normally have liked. But Meg got increasingly agitated and I used every trick in my limited armoury to try to make her calm. Trying to climb out of the bed, albeit the bed had been put into lowest position, could still have ended up with Meg on the floor which was an outcome I desired to avoid. Eventually., after two hours and twenty minutes, it looked as though Meg had finally drifted off to sleep. My sister had given me a FaceTime call just at the point where the care workers had arrived so I said I would return her call at 8.00pm which in my mind became 9.00pm and then 10.00pm but, in the event, I thought I would leave it until the following day. Today, I got up rather late being well nigh exhausted what with the shenanigans all day not to mention all evening but the care workers arrived on time and did their job efficiently, even though Meg was still very sleepy when they arrived. Fortunately, today was one of those days when it seemed to be raining most of the day so there was no question that Meg and I would attempt a trip out today. But we knew that our domestic help would arrive to do her stuff as is normal each Wednesday. Together, we had a look at the little systems I had installed and refined them further. In particular, we took a piece of furniture which we had intended to be a tea trolley but instead rather looked like the kind of trolley that gets trundled around hospital wards when the drugs round occurs. On this we have all the toiletries and other requisites required for Meg’s care so this was a useful re-purposing of something we already had in our possession. When the carers called around to make their midday call, I was amazed to suddenly find them in the room. They had turned up and could not get anyone to respond to the doorbell. Our domestic help had let them in but I was so dog tired with what happened yesterday a certain amount of running around to help our domestic help this morning that I had fallen fast asleep on the chair. Just as our domestic help was on the pont of leaving, a parcel turned up via Amazon or eBay which might prove tremendously useful in our new situation. This was a Chinese made camp bed which appears quite sturdy with eight feet but which concertinas together to fold away into a much smaller space when not required. By the time I have put my temporary folding foam mattress on top of this and I have Meg’s hospital bed put to its lowest position, then the two sleeping surfaces are within about an inch of each other. This means that I can continue to get a comfortable nights sleep but if Meg get’s distressed in the middle of the night, then I am only an arm’s length away. There is also the additional and unintended bonus that if Meg were to attempt to get out of bed or even to fall out of bed then one of the sides of the bed will not now be available to her. Of course, tonight’s sleep will be proof of the pudding but so far I think the improvements we have made to Meg’s new sleeping quarters and with a slight rearrangement of some of our furniture, then our new little systems look ready to settle down.

After I made some lunch for myself, Meg was in quite a sleepy state so I took the opportunity to make a lightning visit down to Waitrose to collect our daily newspaper. One of the Asian partners who knows me well and who is well aware of Meg’s frail condition gave me a hug and a kiss and pressed two bunches of flowers into my hands -one for Meg and the other for myself. Then in the mid afternoon, we were rather fixated on the evidence to the Post Office statutory enquiry of Paula Vennels (previous CEO of the Post Office) On one stage in this ‘show’, we had tears as well as the by now customary litany of arguing that they could not remember a relevant email which was now displayed to the rest of us. But then I received a very long and welcome phone call from one of my (female) ex-University of Winchester colleagues who reads this blog daily and is a tremendous source of advice and practical help which she gave to me at the time of my colon cancer episode some six years ago now and is now being repeated for Meg. My friend has very direct experience of nursing both her mother and her sister so she absolutely knows what she is talking about. She is currently experiencing some of the traumas associated with selling her house in Oxfordshire which is going slowly and seems to be generating some of the kinds of problems with estate agents which one could well do without.

Very late on this afternoon, there was very well informed speculation (broken by Beth Rigby on Sky News who often has a fast track on breaking political news) that there will be a general election to be held on July 4th. The microphones are being assembled in front of 10 Downing Street and Rishi Sunak has now condirmed that he is going to make a bold dash for a very thin opportunity to resurrect the fortunes of the Conservative party by going to the country on July 4th. There are one or two smidgeons of comfort for the Tory party (inflation dropping, Rwanda legislation passed) that Rishi Sunak thinks the gamble may be worth. However, the Tories are 20 points behind in the opinion polls but there is always the thought that they think that things might be even worse in a few months time so who not go the country now. Many Tory MPs are nervous of the prospect of a July election but, in general terms, the opposition parties will be delighted. the Labour party in particular is well geared up to an election and the situation in Scotland with the collapse in the SNP) is looking more favourable to them.

Continue Reading

Tuesday, 21st May, 2024 [Day 1527]

Last night was Meg’s first night sleeping alone in her hospital bed which we have located into our repurposed ‘L’ shaped section of our downstairs lounge. When the professionals indicate have you considered a bed downstairs, there are many sequelae to all of this. For a start there are toiletries, clothing, and a variety of cleaning aids and towels to be considered. I am trying to set us a series of little systems each of which is as unobtrusive and clutter-free as possible. For example, I have liberated a little storage box into which Meg’s clothes can be placed ready for the carers to dress her in the morning. Similarly, various washing aids are located in the downstairs bathroom and so on. As it was Meg’s first night alone as it were last night, then I was slightly concerned that Meg might wait up anxious and distressed in the middle of the night and I would not have any knowledge of this. So I set up a little system whereby I have a little portable folding mattress and I know this is reasonably comfortable because I have used it before in the middle of the night. All it needed to make me comfortable given the temperature at the moment was a sheet folded double and a blanket and this was fine during the night. I also brought my clock radio downstairs so that I could drift off to sleep listening to some music and then be awakened with Radio4 coming on at 6.30am in the morning. This little system worked pretty well and I managed to get everything folded up and put away into unobtrusive storage locations. A couple of very competent care workers that I know well turned up at the appointed hour and they gave Meg a good body wash on the bed which evidently is now adjustable to ensure that they are working at a reasonable height. But a body wash requires a certain rolling of the patient from one side to another so can turn out to be a more complex procedure than might be imagined at first sight. Then it was case of utilising the newly installed hoist to get Meg into her wheelchair and then relocated into our Music Lounge so that I could proceed and get some breakfast into her. Porridge in a mug rather than toast tends to be an easier option nowadays and then we were ready to attempt to set forth for the first time in four days. I had found amongst other aids one of those squarish foam cushions in a vinyl case which I think a physio had supplied for Meg at some stage in the past so I thought it would be a good idea to add this to the wheelchair to enhance the comfort of the same whilst I was wheeling Meg first down and then up the hill.

Now the nightmarish part of the day started. The foam cushion which I thought would be a good idea proved to be a bit of a disaster because, as Meg does not possess any ability to seat back in a seat, she gradually slipped further and further forward which meant that her feet were in constant danger of hitting the ground and occasionally did so. This culminated in several instances where I could not propel Meg forwards as she was in a semi-recumbent position in the wheelchair with her feet on the floor. As we were crossing the road immediately in front of Waitrose, the traffic had come to a halt where I was trying to get Meg’s feet back onto the foot stays in order to get across the road. In fact, one of our Waitrose friends observed my plight and came out of the store to offer some assistance as did one of the Waitrose staff. So we consumed our normal coffee but I had to cut our visit short because it was evident that Meg was slipping further down (and none of us can actually move her back up the wheelchair again) The journey back proved to be particularly problematic. One fairly old lady (late 70’s I would say) offered her assistance in trying to get Meg into a more upright position. After I had proceeded some yards further on, Meg had slipped down even more and were feet were plonked firmly on the pavement about a foot in front of the wheelchair. Observing my struggles trying to move Meg’s feet back into a position where I could actually get her home, a passing motorist stopped his car whilst he, and a passing very helpful female helped me to haul Meg back properly into her seat. I took the opportunity to remove the cushion which I judged to be the immediate source of all of our problems and once this had been removed, I managed to make my home without further incident but very slowly. Just as I was arriving back home, the two carers turned up (two being necessary because Healthy and Safety are such that a single carer is not allowed to hoist Meg singlehanded although paradoxically I could do it myself once I have got myself sufficiently conversant with how the hoist works) The carers then take Meg down to her downstairs bed, make her comfortable, and then via the hoist and the transit chair get her down to her favourite armchair in our Music Lounge. The sitting carer came to relieve me so that I could, in theory, go off and do Pilates but after the traumas of the morning, I was more than happy for the carer to keep Meg company whilst I prepared some lunch. I desperately wanted Meg to get some sleep this afternoon bit it was not be. I did, however, go onto the internet and ordered some ankle straps which I hope will serve to keep Meg’s feet and ankles strapped to the frame of the wheelchair the next time we venture out. I have also asked that our doctor refers us on the Worcs Wheelchair Service but whether we meet the exact criteria for this I cannot determine and I have heard, on the grapevine, that there might be an 18 week wait in any case. But one can only ask.

Continue Reading

Monday, 20th May, 2024 [Day 1526]

Well, today has been quite a mixed day so far. I had rather hoped that the care staff would get Meg washed, dressed and ready to face the world before the OT staff were due to call around in the late morning. But this was not to be as the care staff were still under instructions to keep Meg in bed. I had a couple of the more friendly and knowledgeable staff on this morning so we decided that we have Meg fully dressed and ready to come downstairs when needed. So most of the morning we were in our bedroom waiting for the phone to ring and eventually a pair of physios called around at about midday.They had a look at Meg and then another look at the new arrangements put in place downstairs and then we decided on a course of action. We got Meg down on the stairlift and then the physios/OT tried her out on the Sara Stedy. Although we used this bit of kit successfully, they could see it was a bit of a struggle so decided that a hoist was going to be the better solution to transferring Meg from one place to another. We started off getting Meg into one of our armchairs and we then had a think about things before transferring her onto the hospital bed. The thing about these care staff is that they are excessively practical and not unnecessarily rule-bound and I have a great deal of time and respect for them. The lead worker had actually worked in a care setting before she had fully trained in physiotherapy and she remembered how Meg was a few months ago and I found her incredibly helpful. We discussed a range of options including some that I had sort of worked out for myself. Instead of having bed rails or guards on which it is possible to be impaled, we jointly agreed a strategy in which we would set the bed to the lowest possible position which is about 17″-18″ once Meg was all tucked in and ready to go to sleep- then if she were to tumble out of bed it would be a general slither rather than falling from a great height. The physio tried to stay on to make contact with the care workers who were about three quarters of an hour late and they did manage to have a few snatched words with each other as one was departing and the others were arriving. Then things started to go somewhat pear shaped, as it were. Two very young care workers were sent along – one still at university and doing bits of fill-in and the other a recent graduate. The care workers are pleasant and willing but by the very nature of things are not very experienced. To make matters worse, one of them had not been trained n manual handling and therefore was not allowed to use the hoist. The other young girl could not use the hoist on her own so the sending along of two inappropriate care workers meant that Meg was confined to bed for the whole of the afternoon when I hoped that we would be able to get out and about. But the physios have to formally get Meg’s arrangements signed off and transmitted to the care agency, all of which takes time. In addition, Meg needed some additional help and I would have dearly wanted the care agency to have supplied the appropriate staff under the circumstances. The staff who are due in the late afternoon are appropriately trained but this is all a little bit late in the day for us.

In the middle of the afternoon, I got a very welcome phone call from one of the nurses who specialise in Meg’s condition and, as always, she was a great source of both advice and support. I had wondered aloud to the OT whether Meg might qualify for a more comfortable wheelchair if she was now going to be spending hours in it when not in bed. The Admiral nurse was going to liaise with the OT to see if we could make a referral to the Worcestershire ‘Wheelchair, Posture & Mobility Service‘. It looks as there may be forms to fill in and assessments to be made, criteria to be fulfilled but at least we are exploring the avenues open to us in this direction. I have found the Admiral nurses to be excellent in every way and I am full of praise and admiration for them, not least because they manage to fulfil a quasi-advocacy role for patients in Meg’s condition and have proved helpful in the past.

We always knew that the news today was going to be dominated by the publication of the Contaminated Blood Inquiry which is being billed as one of the biggest scandals in NHS history. Not really being in front of our TV today, we have not really caught up with the news as it unfolds. Sky News is reporting that the infected blood scandal was ‘not an accident’, with ‘catalogue of failures’ and ‘downright deception’ by NHS and governments. The Department of Health workers had deliberately destroyed documents, which amounts to a ‘pervasive cover-up’, says inquiry chair Sir Brian Langstaff. Neither do the politicians avoid censure. Turning to the wider Thatcher government, the report said a repeated line that patients had ‘the best treatment available on the then current medical advice’ was ‘not true. In short, adopting the line amounted to blindness.’ In particular, the evidence of Lord Clark (Kenneth Clark, one time Health Secretary) was said to be ‘argumentative’, as well as ‘unfairly dismissive’ and ‘disparaging towards’ those who have suffered. What is absolutely amazing to us is that blood products sourced from American sex workers, prison inmates and addicts and predictably at an incredibly high risk of AIDS as well as Hepatitis C, were routinely used by medical personnel for decades with no thought as to the consequences. It looks as though British authorities had been pressured by American commercial interests pushing ‘Factor 8’ with no thought to the consequences for haemophiliac patients who were kept ignorant of the risks to which they had been exposed and from which many died.

Continue Reading

Sunday, 19th May, 2024 [Day 1525]

So we got one half of the difficult weekend negotiated when Meg is confined to her bed on the instruction of the care agency. However, last night after she had settled off to sleep, I did manage to get the back lawns cut, which they badly needed only to be reminded that I must seize opportunities when I can to get the front done as well. Meg had a somewhat disturbed night and had to be made comfortable in the middle of the night which is not easily done singlehanded. Sunday mornings are not particularly to be looked forward to as we are scheduled to have our care workers at 7.00am rather than the normal 8.30am and this makes it a longer morning for the two of us. After breakfast I made a lightning visit out to collect the Sunday newspaper and the reading of these occupied me for most of the morning whilst Meg watched the Alan Titchmarch programme on ITV1 which I must admit I quite enjoy myself. In some of the odd moments that I had whilst preparing breakfast this morning, I managed to get some audio sorted out for Meg. I have one of my Panasonic units which is permanently tuned to ClassicFM – as the display had failed, I had contacted the seller who let me have the whole unit gratis. This is complemented by a Pure Radio in which since the ‘upgrade’ of ClassicFM I have been unable to receive on this DAB unit but the happy combination of two slightly dodgy systems give us what we want which is Radio4 when we want it and ClassicFM as a default. After the late morning care workers and had come and sorted Meg out, I cooked us a lunch which was a conventional meat and two veg meal, having had a salad yesterday. To try to ensure that Meg is getting enough fluids inside her, we finished off with a coconut yogurt which Aldi sell but which is absolutely delicious.I have started to think about how the hospital downstairs interacts with other domestic systems such as washing and dressing. The care workers are very helpful and practical and once Meg is out of bed and mobile, then they can wheel her down the passageway along to our downstairs loo which might be better in the long than running all over the place with bowls of water, towels and other washing gear. I have started to think about the clothes in which she is to be dressed because I want to avoid the clutter of this all over the place in the lounge-cum-bedroom. I have ordered from Amazon an under-bed chest (available at a ridiculously cheap price and delivered) and I think this might be a better solution than additional downstairs cupboards or chests of drawers and the like. I seem to remember that when we moved house some seventeen years ago now, whilst we were surrounded by seemingly dozens of cardboard boxes, I tried to resolve only to bring into a room (such as our study) only that which was absolutely essential for it to function. The intention behind this was good but with the passing of the months and years, this good intention did not last for very long. However, I am going to try to keep Meg’s new sleeping space as completely uncluttered as I possibly can.

Now for a bit of a technology moan. My principal computer is an Apple MAC and I have the official Apple mouse to accompany my main system. This mouse whilst being quite ergonomically well designed needs every so often to have its internal battery recharged and the recharging point is on the bottom of the mouse which means it has to be detached from the computer whist charging which is inconvenient to put it mildly. My Apple mouse started to malfunction as the mouse pointer used to get half way across the screen and then ‘stick’ I wondered whether the problem might be my very old and ancient mouse mat so I bought a new one but the problem remained. Eventually, in desperation, I bought an Amazon Basic ergonomic mouse which needs a little nano receiver in a USB port and so it is effectively cordless. I bought this a week or so ago thinking would bring it into use when the Apple mouse finally seemed to die a death. Eventually after the mouse played up so much I decided to bring the Amazon Basic mouse into use. It worked perfectly and needed no configuration – once the nano receiver was in the USB port the mouse worked perfectly and with a great deal of sensitivity although this is adjustable and I thought that the £13 I paid for it with delivery included was well worth while.

As Meg and I were settling down for a little afternoon rest, my son and daughter-in-law turned up to spend some time with us. I was particularly glad to see them as we could discuss some of the the bedding requirements that Meg may or may not require once she occupies her new hospital bed downstairs. Also, whilst my family were sitting with Meg, it gave me the opportunity to dash out and get the front lawns cut which badly needed doing – I am convinced that grass grows more quickly in May than any other of the summer months. I always feel that once I get as far as June or July, the rate of growth slows down somewhat and the miss of an occasional week can be tolerated but as things stand, I do need to keep up with a weekly routine. Meg and I will be sleeping in the same bed for the last time in approximately 57 years so this is going to be quite an adjustment for us both to make. But I am hopeful that Meg will enjoy her new surroundings which will make life easier so that the care staff can use a hoist to get from the hospital bed into her wheelchair and then, hopefully, we can resume our little trips down the hill.

Continue Reading

Saturday, 18th May, 2024 [Day 1524]

I always thought that today was being the start of an uncomfortable weekend, ever since we were informed by the care agency that they would not sanction their care staff moving Meg out of bed until such time as a hospital bed and a proper hoist had been installed in a downstairs room. Accordingly, after Meg was safely put to bed, I set to work rearranging some of the furniture in our ‘L’ shaped lounge such that one half of it would remain a conventional lounge whilst the other half of the ‘L’ would be brought into use as a downstairs bedroom. The furniture configuration was actually quite easy and I was just left with a few indentation marks from the feet of chairs and the settee we had in that half of the room. But I deployed an old trick which I deployed 26 years ago and it works like this. You take an ice cube and leave it overnight in each of the indentations in the carpet. As the ice cube melts, the fibres of the carpet absorb the moisture and in the morning, the problem of the unsightly indentations if not completely resolved is certainly very much alleviated particularly with a hoovering immediately afterwards. This morning, Meg was confined to her bed but fortunately stayed fast asleep for several hours this morning. During this time, I raided the blanket chest which we keep at the foot of our double bed and brought some sheets downstairs for use on the hospital bed. I also took the opportunity of doing some much needed tidying up and throwing away and this took most of the morning. In the late morning, the hospital bed arrived and this was assembled by a very friendly Egyptian who had a degree in law but was employed in this country as an equipment supplier for the NHS. The bed took a certain amount of putting together and evidently connecting to an electricity supply. The bed is not the really fancy model that you get in modern hospital ward but is probably the generation beforehand. Nonetheless the orientations deployed by using a control remote are quite comprehensive as the total height can be raised or lowered and one can adjust the height of the head and the knees a well as a complete tilt upwards or downwards. I have had a chance for a little play on it and it really does seem very straightforward. When the care workers came, there was comparatively little that they they needed to do for Meg as she had been asleep practically all of the morning, So whilst we had some ‘spare’ time so to speak, the three of us made up the bed downstairs with the bedding I had managed to locate. I did find a complete duvet bought decades beforehand and all in its original packaging but I really need a duvet for a single bed. I may need to go online and purchase a single bed duvet but I am going to hold my horses for the time being. Firstly, the next few day are going to be very warm and secondly we have already pressed into service the sheet and the blanket that we acquire from the hospital the other day. It might be that we do not actually need a warm duvet until the it starts to get colder in the autumn so we can probably make do in the next few days. I was more than happy to let the two care workers make up the bed according to what they think of as being best, the only thing that we may need to do is get a more specialised mattress which if Meg is going to be in bed for more prolonged periods may be needed to avoided pressure sores not to mention the prevention of more blood clots.

Once the bed had been installed and the carers had left, I rescued the fish pie which had been in the oven for far too long. Nonetheless, I managed to rescue sufficient for a few mouthfuls of nutritious fish for Meg and the reminder for myself. As Meg had been asleep practically all of the morning, she is passively watching some TV which unfortunately on our bedroom model, does not have an Amazon prime stick installed on it. We are hoping that as from Monday, Meg will be sleeping downstairs and I am reconciling myself that after 57 years of sleeping with a married woman (i.e. Meg) I am going to have to get used to sleeping on my own from now on. Of course I have been used to sleeping on my own when I was doing my stints abroad (a term in Madrid and a month in Jakarta, Indonesia) but that is very different because one knows its is only for a temporary period of time which will end but now we are in a very different scenario.

I normally do not take a great deal of interest in football but there are intriguing matches recently. Many local people here in Bromsgrove are great fans of West Bromwich Albion otherwise affectionately known as ‘The Baggies’ but they have were swept aside by Southampton last night. Southampton will meet meet Leeds United in a play-off to see who can enter the Premier division next season in about two weeks time and these are often ferocious clashes. The FA Cup Final itself if often played about the time of my birthday but seems a bit later this year being held next Saturday. It is a Manchester City vs. Manchester United affair and one wonders what interest it will have for football fans who are not Mancunians. Having said that, some cup finals fail to live up to their excitement and this is normally greater when you have a much more lowly ranked team playing a much more highly ranked team just in case the underdog happens to turn the tables. But I must confess to enjoying Rugby Union much more than Association Football these days not least because in Rugby Union there is none of the nonsense of threatening the referee to try to get them to overturn a disputed decision.

Continue Reading

Friday, 17th May, 2024 [Day 1523]

Today is evidently going to be a day of very mixed fortunes and I am not sure how things are going to turn out. We knew that we would have some visitors this morning and indeed, an OT and a physio turned up this morning and agreed that as a matter of priority should have a hospital bed and an accompanying hoist downstairs. In our ‘L’ shaped lounge, I have an area designated for where should a bed should go and also sought the opinions of two carers on the assumption that three sets of eyes are better than one and we are all in agreement. Tonight, I will need to do some furniture shifting but that is not a difficult job as it turns out. The good news is that a hospital bed is going to be supplied to us on loan from the NHS as long as it is needed and the hoist that will be supplied along side it will evidently work in conjunction with it. Also, it appears that the bed will have adjustable positions and have a specialised mattress which all ought to assist in getting Meg’s legs into the right position so that the DVT can gradually right itself. Once these ReAblement professionals had left, although it was midday I decided that I would take Meg out in her outside wheelchair as it was such a beautiful day compared with yesterday, when it seemed to raining all day long. As we passing the church friends of ours who are avid gardeners, they took the opportunity to have a break from their labours as they were both busy in the garden and invited us round onto their terrace where we enjoyed some delicious coffee and biscuits. Meg had a coke which she has probably not drunk for years now.

From this point on, though, the day started to go a little pear-shaped. Half way through our repast with our friends, I got a call from the manager of the care agency who informed me that he thought their staff were at risk having to handle the dead weight that Meg presents whenever we attempt to use the Sara Stedy or even to stand up. So he informed me that Meg should be confined to bed until a hospital bed and hoist had been installed and, presumably, his care staff have been instructed not to depart from these instructions. So that presents me with a short term management problem how to cope with Meg under these constrained circumstances. Later in the afternoon, I got a call from the OT of the ReAblement team to let me know that a bed and hoist would be delivered tomorrow which you might have thought was good news. But the care staff could not use it before Monday midday at the earliest as the OT staff had to come along to assess health and safety as they bold me that a hoist had to be operated by two care workers at once. So the OT will come along on Monday and let us hope that everything will be usable from that point on but there is a certain degree of unpredictability about all of these things.

I also got some rather devastating news from my University of Winchester friend who has been caring for his very ill wife and battling with the bureaucracy to get continuous funding to cope with her care. But the devastating news for the two of us was that the application for continuing care funding has been refused even though my friend had been through a two stage assessment and in the critical assessment, six of the seven panel members had thought that continuous funding out to be awarded. But the chairperson was the one dissenting voice and when this put to the whole of the Integrated Care Board, the Board as a whole backed their chairperson and ignored the other six votes. Evidently an appeal must be prepared but this extends the whole agonising process, made even worse by the fact that my friend had been thinking that his chances of success were reasonably high. We are going to telephone each other night to console each other although my friends’s woes are so much worse than mine. At some time I shall have to start thinking about bedding and the kinds of facilities we need to have on hand for a ‘bedroom downstairs’ as we are moving in that direction. I have to wait until Meg is safely and soundly asleep before I start on these domestic matters but the trouble is I am fighting a degree of tiredness after I have been caring for Meg during the day. Today is one of those days when she resolutely refuses to try to sleep after our lunch which means that there is no real respite. Neither of us felt particularly hungry this lunch time, even though I had a fish pie in the oven. I have left it there for the time being and I fed Meg and I on a thrown together salad meal which all I feel we felt like today. It is quite a problem getting the requisite amount of food and drink inside Meg these days, even though those who needs for an absolute number of calories must have been diminished as her activity levels are so low.

It looks as thought the Trump case may be heading for a resolution within days now. The case hinges upon whether each of the jurors agrees with the Michael Cohen (ex Trump lawyer) version of events, even though he is a proven and convicted liar. But the one telling defence that Cohen has is to admit that he did lie and lie and lie again but he did it to protect the interests of ex-President Trump. Despite the various revelations, Trump’s poll standings do not appear to have been damaged as such but one interesting thing has emerged from the trial. This is that Trump often appears to doze off even whilst evidence is being given against him in the courtroom and this is leading some experts to wonder whether Trump might be showing the early stages of dementia. But dozing off and making elementary mistakes in recall seem to have been a problem with Jo Biden so the great American public are faced with the prospect of electing one of two equally senile presidents. Even if Trump is convicted, there will be an instant appeal and the case will drag on for months yet, which will be to Trump’s ultimate advantage. Indeed, I saw an ardent Republican giving her opinion that Trump would be convicted initially but would almost certainly win on his appeal.

Continue Reading

Thursday, 16th May, 2024 [Day 1522]

We always knew that today was going to be quite a fraught day today, dominated by the hospital appointment at the local hospital to investigate the oedema in Mg’s left leg. Once we had got Meg up up and breakfasted, the ambulance actually turned up about three quarters of an hour early but the crew were very pleasant and got Meg loaded onto the Sara Stedy and thence to their own specialist ambulance stretcher. Having got Meg loaded in, we then went to a care home to pick up another patient. Then we heard a tremendous kerfuffle because the ambulance crew refused to load a wheelchair that was not certificated as crash tested whereas the care home thought the ambulance would be providing a crash certificated wheelchair. All kinds of negotiations and discussions were going on behind our backs which we could not observe but only hear, the upshot being that the (demented) old lady could not be transported until the home provided the correct wheel chair (a subsequent ambulance crew told us that homes did this to cut costs and to save money) So we arrived at the hospital and Meg got loaded quite quickly onto the treatment couch using a combination of slide boards and slide sheets. The middle aged but vastly experienced technician allowed me to view as much of the data as I needed as it was UltraSound imaging with no radiation risk. I could tell how experienced he was because he immediately started scanning Meg’s groin and clearly identified a DVT (deep vein thrombosis) almost within a minute of starting. He explained that as the DVT had travelled up the leg to the groin there was no point in starting to scan any lower but he did (reassuringly) scan Meg’s abdomen and no clot was showing up there. He explained that this condition was fairly easily treated in his opinion and he was kindness personified, as was the nurse who assisted. Then we were escorted to a waiting area at about 12.00 midday or just before, awaiting the specialised transport back home. Suspecting that we might have a long wait in front of us, I had taken the precaution of taking along a flask of coffee and some crunchy biscuits and this helped to make the initial part of the wait a bit more bearable. But after an hour and half Meg was becoming understandably restless and the nurse who had attended us came along to see us to see what she could do to help. She phoned up the ambulance agency which indicated that we might only have to wait for a further 40 minutes but this turned out to be an hour. But a very kindly radiographer who had seen us waiting for a very long time went to get us some sandwiches (which I must say were delicious) and a cup of tea for myself and he even brought along some tea for Meg in a little silver teapot so that I could pour the contents into Meg’s feeding cup. I must say that the act of feeding ourselves with some sandwiches plus the conversation that we had with the radiographer helped to pass some of the time. I suspect that as it was 1.00am we were in a bit of a lull between the morning and the afternoon appointments. Bus this act of kindness was much appreciated but the entire wait for the transport to come home was two and a half hours. In the ambulance, we picked up another patient who had to be delivered to a care home in an obscure part of Redditch unknown to us and then we made our way home through pouring rain and the most horrendous traffic jams not getting home until after 4.00pm. The ambulance crew were very good getting Meg onto her chair via the Sara Stedy (although in theory, they had not been trained how to use this) but fortunately did not completely follow the rule book. As we coming in the house, the care agency manager phoned with a rater obscure message that I did not quite understand that the OT wanted to assess Meg whilst she was in bed. Of course, what I suspected would happen did happen – the OT person tried to contact us although I had informed the ReAblement team that Meg had a hospital visit booked for the day. Because of the problems of mobile phones deep in the heart of a hospital and surrounded by X-ray and other scanning machines, this call did not get through to me nor did the subsequent message. So when I returned home, I had to phone the ReAblement team to confirm that an OT would be coming to assess us tomorrow but they could not give me a time. I got a message, though, from the senior partner at the GP practice informing me of the result that the radiologist and I had seen with our own eyes of the DVT from which Meg is suffering and for which she is already taking the medication.

An unexpected bonus has come our way after this little hospital episode. The friendly radiologist who had gone out of his way to supply us with sandwiches extracted the slide sheets upon which Meg had been lying when she was eventually transferred to the ambulance stretcher, offering them to us and explaining that they would only be thrown away otherwise. So we accepted these with alacrity and once we got Meg inside the house realised that we had acquired both a hospital sheet (that had been used to get Meg into the right position) and also a hospital blanket. We asked the ambulance crew what to do with these items and they just told us to keep them. In truth, both of these are items for which we can we can find a ready use. So we are spending the rest of the afternoon in a contemplative state listening to ClassicFM before we catch up on the evening news and then get ourselves ready for bed at about 7.30pm

Continue Reading