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.