Awarded Social Care ‘Cancer Blog of the Year! by Global Health and Pharma
A friend calls his diary ‘my dreary’; since he had cancer it now lists hospital appointments instead of parties. Know exactly what he means – so here is my Dreary.
Nothing has improved since the days Andrew Lansley looked down his arrogant nose and tried to gloss over the fact that UK’s cancer care was far behind rest of Europe. This week comes a new study, saying we still lag behind – and the typical wooden dummy ‘spokesperson’ wheeled out by NHS England came out to brush aside shocking statistics, saying “cancer survival is at a “record high” in England; latest report says the rest of Europe also has ‘record high ‘, but pitched at a higher level than UK.
Then came the mantra, the biggest opportunities for further improvements in UK cancer survival currently come mainly from earlier diagnosis, modern radiotherapy and surgery, as against just higher spending on cancer drugs with a modest impact on life expectancy” .
Just try and present at your GP’s with possible cancer symptoms to be investigated – as I found out, one’s concerns are pooh poohed. Where a European GP would send you off for investigation, rightly concluding that it is better to possibly waste money on carrying out a relatively inexpensive investigation, than mop up the consequences if cancer is overlooked . Here the ‘wet hehind the ears’ Locum tried to look knowledgeable, and tell me that a doctor from Sweden’s Karolinska Institute (World renowned for cancer treatment) doesn’t know what’s what – and in his opinion I don’t need an investigation on moles on my body – when experienced Swede had said yes..
Be warned, Jeremy Hunt. If the moles turn out to be nasty – my sleeves are already rolled up for a fight with NHS to reclaim cost of private investigation and treatment.
My favourite acronym is KISS (Keep it Simple, Stupid). So often during medical treatment I think of this, whilst doctors pull long faces discussing treatment option when you know Granny’s remedy is best. Now, the Grenfell Tower enquiry looks like suffering, as – quite rightly – people ask for the Public Enquiry to be extended.
However, the more that is included, and the wider-ranging the enqury, the longer it will take. Surely, everyone involved wants to know as soon as possible what caused the dreadful fire, and how best to avoid a further disaster. So let the Judge, Sir Martin Moore-Bick, get on with the enquiry as soon as possible, and call for a further one if questions are left unanswered. But I can’t help feeling that the sooner the Judge gets going, the sooner the most important questions will come out. Then it will be up to residents to demand further safeguards that might be necessary. And get on with sorting them out. Not jump up and down trying to score political points.
I can never understand why the NHS comes under a political master, so parties can play ‘politics’ with something that is so vitally important to everyone; don’t let the Grenfell disaster descend into a political, name-calling quagmire. I shall be keeping an eye on things, because the Managing Agents for my block of flats are also the KCTMO. Now, hopefully they can’t ignore responsibilities, as they have in the past.
This has been an extraordinary month, for horrible reasons. At last, after years of futile letters, the arrogant officials that supervise the lives of many in Kensington and Chesea have been exposed, and forced to resign. You would imagine that Kensington and Chelsea was a delightful area, but sadly those of us who live here because we love its history, have been let down by arrogance – from hospital administrators to Council officials.
When I got cancer I expected to be operated on at a local hospital calling itself a ‘world famous cancer centre’, To my surprise, my eminent surgeon, one of its top people, said to me “it’s not good enough for my private patients”. I wenr to another hospital, and he bought his anaethetist with him from this cancer hospital, who caused me no end of problems. When I transferred to this hospital for post-op treatment, I soon found out what he meant, with its top Dermatologist trying to convince me side effects from Tamoxifen were “due to your age”, and arrogance from Oncologists who ignored information from American cancer centres when I came down with horrendous side effects from the drugs I was given. I wanted to survive, so took myself to top cancer centres in Europe, but one would expect better from a Royal Borough hospital.
A neighbour works at the Grenfell Tower nursery, and I live in a KCTMO managed building, so we know exactly how thie arrogant Council and its tenant management organisation ignored the rights of tenants. Is it something in the air, that anyone with a authority in Kensington or Chelsea, treats tenants patients and residents as though we are medieaval surfs? Well, the top Council official and his deputy have been made to resign, as has the head honcho at the KCTMO.
But I wonder if this is such a good idea? I would have preferred them to be told they had to clear up the mess, rather than get the usual ‘pay off’; after all, who better than this trio to know where the proverbial skeletons lie ? Someone else is going to have to spend hours delving into paperwork.
The Governent has called the Council and the KCTMO to book, although I hear the Council is using its funds (contributed to by residents now clamouring for accountability) to hire a massive team of QCs to defend its reputation – and skins. My residents’ association wants to ensure that officials are held accountable, as do many, many embittered residents.
I grew up believing that old-fashioned virtues were important; you automatically looked after vulnerable people in the community, and voted Conservative. How the party has changed. Once run by the Women’s Institute type of female, who ‘got on with helping others’, didn’t allow the Blitz to faze her, and was more than capable of running anything from a soup kitchen to a refugee camp at a moment’s notice; it’s now full of self-seeking officials and to hxll with principles.
The ‘old’ type of Conservative/Philanthropist who built model communities here in Victorian times has long since gone, and RBKC is run by ‘new’ Conservative’: what a self-seeking, arrogant bunch they are. The Council has Bentleys so its top staff travel in comfort, but couldn’t even produce a Boy Scout tent as a focal point for destitute residents to meet an official. Once keen to send Inspectors into any building project run by the ordinary person, and charging a massive amount to supply a ‘licence’, it ignored clamour from residents worried about their safety. I once tried to report a major health issue to the Council, only to be told by its EHO he couldn’t touch this because “you live in a KCTMO-managed building”.
Where is the old-fashioned Mayor who had the guts to stand up to a crowd – and convince them their Council were going to address their wrongs? And to add ts mis-deads, Healthwatch, closely associated with RBKC has wiped cancer concerns off its map and disbanded the voluntary group looking into local cancer services, to save money..
Residents have shown they know how to behave, and got themselves organised without any guidance from RBKC. My neighbour says they are looking after themselves, but it worries me that when the volunteers have run out of time, RBKC won’t have support systems in place. They should take note of St. Mary’s Hospital, featured in the latest eposode of “Hospital”. They had a 170 page document to work from, detailing what to do in an emergency. The staff read it, digested and then formed their own emergency team. And Boy, didn’t they perform well when faced with Emergency on top of Emergency – the usual overcrowding problems of NHS hospitals and then having to deal with the terrorist attack on Westminster Bridge, They even had a doctor who spoke French to one of the victims. This was ‘ordinary’ people who had thought out what to do – and did it. RBKC take note.
My residents association is about to meet, talk through the concerns we have about a Council money-making scheme to dump a Street Sweepers’ depot in front of our bedroom windows (they think we will welcome this!) and now we worry our concerns about Health and Safety will be brushed aside – or as is a favourite ploy with RBKC – announced over a Bank Holiday so no-one notices or is around to object.
There is a lesson to be learnt from the marvellous community volunteers in Kensington – ‘ordinary’ people can organise – so perhaps RBKC will listen to them. Incidentally there was snide media comment about celebrities jumping on the bandwagon to help – but they live in our Borough and that’s what neighbours do.
Oh boy! Next door’s MP for Kensington was ousted by Labour – and this in a previously staunch Tory area. Sadly Victoria Borwick (previous Conservative MP) suffered from Tory arrogance, and voters turned to a hard-working local, Emma Dent Coad (Labour), overturning a 7,000+ majority by an exciting 20 votes!
It seems that the Conservatives assumed everyone was interested in Brexit, whereas the NHS was uppermost in most people’s minds here. The five major cancer hospitals in the area are riddled with ‘private’ companies that are creaming off NHS funding, and short changing patients. By all means get in local expertise supplied by Harley Street and probably best private hospitals in UK, but don’t expect to get this on the cheap – as happens now and lets patients down. The Council, which is almost totally Conservative, has knocked cancer off the Healthwatch list of priorities, and after the horrendous fire in Grenfell Tower high rise, has even more questions to answer.
KCTMO (Tenant Management Association), who ignored residents pointing out that it needed a disaster to get something done about concerns, currently shows a photo of a balloon-waving partying tenant as a heading for its home page.
As a Borough, Kensington and Chelsea are unique; rich and very poor live next door to each other and get on well. In the days when you did good with your money rather than add another car or yacht to your possessions, Victorian millionaires realised the poor needed housing, and built huge Estates for them in Chelsea. Developers, encouraged by the Council, are now moving in to ‘gentrify’ these, and they will be lost forever to descendants of those for whom they were intended. Let’s hope RBKC Council think – take back the flats they have shamefully given over to private developers, and use them to house the homeless from Grenfell Tower. At least this way dis-placed residents won’t have to move away from friends and family in the borough.
You get what you pay for – and if you live in Kensington and Chelsea and have money, you can buy excellent cancer care. But if you rely on the NHS, you suffer today what is going to be rolled out across the UK tomorrow.
P.S. Good heavens – the KCTMO has finally removed their offensive photo !
Like so many others, I stayed up to watch Election results. When I stagger bleary-eyed into Fracture Clinic morning after, I find Consultant (with whom I had built up a good rapport) wasn’t there. Ominous – three top Consultants have recently left my local Foundation Hospital, two after over 20 years’ service, yet they are so eminent their names are still kept on the website.
In the Fracture Clinic, the cuts are already biting, and when I ask nice Registrar what I can do to increase mobility, without hesitation he says “well, Physio is the best thing – do you have private insurance?” This from a hospital that always trumpeted the NHS way.
I think this is a fore-runner of the way NHS is going – we will have to bite the bullet and pay – so for ways and means look on my site and key in ‘Private’ , ‘Karol Sikora’, Paying for, Choosing, etc. to see all the posts in which I mention ways of paying for private care.
Puzzling day – whom do I trust? Two days ago Swedish doctor who had trained at Karolinska Institute (one of world’s top cancer centres) says my moles should be looked at. https://aftercancers.com/2017/06/playing-the-system-to-get-nhs-treatment/
Today, see Locum at surgery to get a referral, and he says moles aren’t cancerous, etc. If he was trying to reassure me he didn’t. And what he described sounded very much like something that might turn cancerous if ignored.
Eventually he sees I am not going to go away, so says he will refer me – looks up appointment and sees first one available is September!
I trust the Swedish doctor more – she has had experience of working with cancer. So it’s time to go private – reluctantly. But it makes me mad because we are told we should get possible cancers checked out a.s.a.p. before they turn nasty. No wonder we are bottom of post-cancer survival rates in Europe.
As the snap general election approaches, the BMA is calling for politicians “not to duck this crisis any longer” and agree on a long-term solution to protect the NHS.
I only hope those politicians who wrote their party manifestos actually have to use the NHS soon – then they will see their empty promises were useless. When the service gets hacked because it didn’t spend a reasonable £5.5 million to safeguard itself (and those who ignored warnings won’t even get a rap over the knuckles) one wonders how many patients’ lives are in chaos because their operations were cancelled.
I can’t find one sensible do-able suggestion in any of the manfestos from the major parties – so will be ‘tactical voting’ on June 8th; not very useful as our sitting MP sucks up to his chums who are privatising the NHS in the worst possible way, as he sits complacently on top of one of biggest parliamentary majorities.
If Government want to privatise the NHS, then go to the well-known and respected private hospitals, Consultants etc. Not the get-rich-quick companies springing up, designed to make money out of the NHS, politicians rich and give us patients one of poorest and worst healthcare systems in Europe .
Cancer charities focuss on raising money, often without thinking what we need. Cancer has left me fairly disabled, so I need to work from home. This website semes to have a mind of its own, so thought I would expand it. For the last two months I have been asking for help re finding courses for people who need to work from home, etc. Nothing. “It’s not something we normally do”. Why not?
Come on charities. Get involved with the Government’s Back to Work schemes. Am sure there is one that will offer help with training for work issues – and there must be many of us left disabled, but able to work from home. Cancer doesn’t rot out brains, and many of us still have a lot to contribute. If anyone knows of a POSITIVE helpline/charity/organisation that can give me practical advice on courses to set up websites, please email firstname.lastname@example.org
Bullying is rife – now it’s the Cabinet Office making hospital administrators cancel an important meeting to try and sort out the mess that faces patients needing hospital transport. Yesterday I was phoned to say a meeting planned for this week had been put off until after the election, on the orders of Whitehall; citing election ‘purdah’ rules.
This seemed strange – what would interest Cabinet Mandarins in such a low-key meeting? Could it be that I had been in correspondence with my MP, Greg Hands (ex-colleague of George Osbourne’s) to say that I was concerned that Uber were bidding for a transport contract; comment in the media had not been favourable, and having served on a GLC transport committee. I could see there was concern. Even though Hands sent me a glowing letter saying how wonderful Uber were, I thanked him but said I still intended to raise this.
Then came the cancellation: one can’t help wondering……… incidentally, since mentioning them my in-box has daily messages asking me if I want to become an Uber driver. Well, I only have one eye, am 78 years old and can’t drive – so perhaps I am a likely candidate!
The forthcoming election means Whitehall Press offices will be bombarding us with election ‘promises’ from every Tom, Dick and Harriet who fancies themselves as a potential MP. Of course, every party will be promising to Save Our NHS – it’s just so sad that none of them will actually come up with anything useful. Just the same old party claptrap. When they shout their slogans in my ear, I can’t wait to challenge them and ask “what are you going to save?” Because if it is the current NHS, with its ever-increasing waiting times for major surgery, extended waits in A & E, drug rationing etc. is it worth it?
And don’t tell me the NHS is “the envy of the world”, when Europeans no longer come here for operations, the only people who envy us are those who only have basic third-world care. Which party is going to be brave enough to include raising taxes for the NHS in its manifesto? And tighten up on who is actually eligible for NHS care? I am not holding my breath.
Oh! for the days of Screaming Lord Sutch: a genuinely honest politician because he admitted he was Loony. Other candidates are, but would never admit to being so.
A Nursing Times investigation reports “thousands of nurses accept payments and benefits from the UK pharmaceutical industry each year, sparking warnings that they should “keep their eyes wide open” in dealings with drugs companies”.
I often wondered why I was given the cold shoulder when I reported horrendous side effects of cancer drugs to the hospital that was treating me. They didn’t want to know, and kept on telling me I was the only person to complain. When they tried to blame massive skin lesions that appeared overnightt on “it’s your age” I went off to France for care.
On my return I was treated like a whistle-blower. The PCAG committee had a ‘Star Chamber’ session where I was told I wasn’t being supportive of the hospital, and I was made to feel a traitor – all because I had pointed out that side effects that appeared shortly after I had been put on certain drugs. were NOT due to my age! When a Consultant went home instead of seeing me for a very important appointment, leaving no apology, I transferred over to King’s College – what a welcome difference. But sadly, due to NHS rules, they can’t go on treating me, so it’s back to the original hospital. This time I stand up for myself, but I wish I didn’t have to!
Now the way I was ostracised all makes sense – but whilst I think medical staff need to know about new drugs, there needs to be more transparency to reassure patients. Please – tell me my awful experience wasn’t normal. email@example.com
Latest NHS horror story is a proposal to sub-contract Uber for some of our hospital transportation. Recently one of the many management consultants working for NHS called a Uber taxi to take two of us patient reps. home. When the driver arrived, he said as there were two of us (going to same street) he would be charging double. Silly consultant got out her purse to pay him until other rep and I complained loudly. Eventually driver climbed down and said he would charge normal fare, then asked “where to?” We mentioned a well-known square half a mile away. “Where’s that” he asked.
I have never found Uber cheaper than black cabs; they usually manage to inflate the fare. Three times I have refused to step into one because they couldn’t produce their obligatory Hire and Reward insurance certificate (if I’d been involved in an accident there wouldn’t have been any compensation), and now the Daily Mail comes out with pages about Cameron and Osbourne’s links with the company. I gather Downing Street is not amused – neither am I. We have ‘black cabs’ in London, which are genuinely the envy of the world, so NHS – why don’t you sub-contract them? All black cabs are fitted with a swivel seat, which is a brilliant and incedibly easy way for disabled to get into the cab.
Most hospital trusts hold meetings where patients can discuss transport, so if this concerns you – ask to be included.
Spent five hours in Outpatients, and what a difference it makes if the staff CARE about patients. A few minutes after I arrived, one of the nurses came out to address us all and apologise for the fact that our surgeon was running over an hour late, due to complex cases. None of us minded – we had been told, and realised that instead of the usual rushed 10 minutes, when our time came, we would get a proper consultation.
More updates were told us re the delay, and eventually I saw my surgeon; he wanted an X-ray, and sent me off to have it done. This included a Judet view – a complicted procedure which I know some X-ray departments don’t do, because they are time-consuming. But this surgeon insists on ‘proper’ care for his patients. Thanks to that, he was able to give me reassuring news, and as I was last person he saw, we had a chat and he told me that I had done the right thing, almost bankrupting myself to ‘go private’. If I had stayed in the hospital where I was at first, I might not be walking now. But the very careful nursing in the private hospital, ‘handling’ me properly in bed, bed rest instead of trying to get me back on my feet and discharging me too early, had enabled my six fractured bones to knit back properly.
The last few days my in-box has been full of emails from doggie friends – cancer hasn’t got a look-in! I used to write dog books, and covered Crufts for various magazines. Gave up on this show several years ago, when I saw how it was becoming a show-case for ‘designer dogs’. My type of dog is a working dog, and how on earth Miami, the American cocker spaniel (supposedly a gun-dog) could be expected to work in muddy fields or beating through brambles and burrs, I don’t know. Wouldn’t like to be the person having to clean him up!
So friends were indignantly emailing through the ether asking what on earth was happening? Like me, they like ‘proper’ dogs’ who are fit for purpose – not bred to show off. if you do too, I wrote About the Border Terrier (Amazon) about ‘my’ breed, and 999 and other working dogs, about the incredible search and rescue, police, sled and other dogs that work for a living. The American Police have copies on http://www.elitek9.com/999-and-Other-Working-Dogs/productinfo/BK16/
Then news comes in that Mitch Seavey, the oldest musher in the Iditarod 1,000 dog sled race, has won the race – again! Up the Oldies, and he did it with huskies, not the designer dogs that other competitors run with.
And instead of encouraging weird designer dogs, would the Kennel Club please concentrate on abolishing puppy farms.
Had an email re Save the NHS March, complaining that BBC had dropped coverage before marchers reached end. Yes, with my journalist hat on, it was because Editors would have discovered the March didn’t say anything. It was a massive protest without a coherent message.
Marchers need to go home, and think about what public actually want. Then choose ONE local campaign for a local service, and get behind that. If people know that their A & E is going to be closed, etc. they will get activated and tell hospital authorities they must save money elsewhere. Then choose what service is to be closed. Because there is no doubt more services will be cut back, such as waiting times for cancer tests. Difficult to pinpoint when times are extended – so cutting funding for these are favourites with hospital administrators. We need to tell these Admin people what WE want, what We consider a priority and what We are happy to down-grade or lose altogether.
There must be enough disabled people around for big companies to think about our needs. I have stopped shopping at John Lewis and Apple – why? Because they are too arrogant to think what we might need. Peter Jones (part of John Lewis) has removed all the chairs it used to dot around the store, so we could rest whilst shopping; telling us it was for Elf n Safety reasons, but we could ask staff to fetch a chair. Not a popular request in front of a queue of people. In place of the chairs there are stacks of wheeled baskets – careful you don’t fall over them. And instead of insisting that we struggle right across the floor to pay, why not copy restaurants and offer card readers?
I had to book a week in advance to get an appointment with an Apple ‘Genius’ to fix my laptop. Lovely lift when I arrived, but stepping out there was nothing to say where I was to meet the Genius (would have thought they should be waiting for me?) All counters are a long way away when you can’t walk far, and no signs to send you to right one. Finally a passing Genius tells me I should join a queue. Looks like it will be waiting for at least 20 minutes, and by then I would have collapsed. Genius takes pity on me, takes me to booked desk, which turns out to be a bar stool at a counter – totally impossible for me to climb on to. Don’t their designers know what we need?
In the 50s when I was treated for Polio, the NHS really was the envy of the world. Every Friday my surgeon would arrive with his Ward Round, always accompanied by at least four foreign doctors sent to Stanmore by their hospitals, and paying good money to the NHS for the chance to learn. Today, only one hospital (amongst the eight I patronise) has foreign doctors sent to learn. Mostly the doctors seem to come from EU countries, where they have better survival rates; today was no exception. I asked the nice doctor with excellent English if his British colleagues asked him about how they treated patients, bearing in mind he came from a country with an excellent record of survival, and I would think we could learn something from them. “No. Never” was the reply. Come on NHS, don’t be so arrogant. You are losing the chance to learn something.
At a journalists’ meeting I said I phoned Dept. Health for facts, confirmation of stories etc. Those round the table looked at me as though I were cuckoo. Then someone said that Dept. Health’s Press Office is a money-wasting enterprise that moves slower than a snail. to nods from around table. I remembered- last time I put in a request for simple information it took them three months to find it. So if other journalists don’t bother with them, what do we need them for? News at the moment is so bad I dread any headline with NHS in it. Minister Jeremy Hunt behaves like a startled rabbit, and is never to be seen – and press office don’t do a very good job of shoring up his popularity – perhaps they hate him as much as we do? So let’s close it down and use millions saved for benefit of NHS
For years I had a paperweight on my desk, a gift from the French company Sodexo to those of us who went to an airline Conference in Brugges. Lying in bed at St. Mary’s, Paddington, I came across ‘my’ paperweight company, now grown enormously and in charge of catering, maintenance etc. at the hospital
Half the call bells on the ward didn’t work, so I contacted their onsite Maintenance office, to be told that faults can only be reported by someone working for the Trust. Complaining to Sodexo, I received a fast reply from their Stephen Beeny to say, “we have lodged this issue” and forwarded it to the Trust’s Hard FM provider” for immediate action”. Then went on to say the reply I was given had not been appropriate and “you rightly would have been frustrated by the response you received”, etc. What a charming and helpful attitude – other Trusts take note.
Whilst the NHS dithers, we are never going to get ‘medical tourists’ pay for treatment they managed to get for free by playing our system. As far as I know, we are the ONLY country in Europe where hospital receptionists don’t bother to check if patients are eligible for treatment in their country. Yet in every other country where I have been treated this has happens automatically. I pointed this out to CEO of local London hospital; her excuse was staff had too much to do to check if patients were entitled to free treatment. From what I have seen here staff have time to chat to Ambulance staff off-duty. Instead of sending NHS Admin staff on junkets abroad, why not send A & E staff to see how European hospitals check in patients.. Teach them how to work a credit card reader, and we could start to recoup the money we are losing.
Unless you swim the Channel, to reach this country everyone must have had to pay for plane or ferry ticket so possess a credit card. Politely tell patients to hand this over BEFORE they are admitted, to pay for their treatment. As happens in every other country. Simples!
Just had an email from NHA Party. Every so often they put out a lovely satirical piece, commenting on the state of the NHS but in an amusing way. I have a wicked sense of humour – so if you do too, do look at their “locum contributor, Julian Patterson, who edits the NHS Network blog and allows them to reproduce Martin PlackardAll ‘s Rear View here. Health Warning: to be read with tongue firmly placed in cheek!
Been watching TV series “Hospital” avidly. It’s filmed at Imperial Trust, bit like home from home for me! Before it started, a Clinician said she was worried that when the series bought out into the open what was actually happening, they would be vilified. Au contraire. I think the public are delighted with the honesty of the programme, and the way staff are able to voice out loud what are their fears for their patients, and how the NHS system is failing them. After the first programme, I was reading comments on the BBC website, posted by the ‘bleeding hearts’ brigade – none of whom got the point that we are not paying enough, so why should we expect all the hard-working staff to work long hours trying to plug the gap?.
Then the Daily Wail’s front page has a story about Trusts rationing hip ops. Frankly, if Gran is in pain, and privately the op costs £5,000. what are people spending money on? A couple of designer handbags, the family holiday to Thailand or other non-essentials? I know where I think the money should go. Yes, theoretically the NHS is there to provide such treatment, but if we don’t throw enough money in the kitty, but prefer to spend it on ourselves, we can’t complain if hospitals don’t have enough in the pot to provide what Europeans get, because they fund their health services adequately.
Opened a forum (for women principally) and usual moans re NHS treatment – but no suggestions for what could be done to improve matters. Just moans. Had a chat with my Dutch Physio (married to an Englishman, so we have benefit of her expertise) and she is constantly amazed at the way the British put up with poor medical care. As she tells me, the Dutch expect to take care of their health, are much more pro-active. If something isn’t right they sort it out themselves..
After my experience below, had an appointment at King’s College Hospital – sorting out my Osteoporosis problems. What a difference !!! First, arrived early thanks to hospital transport; I was due a whole range of tests, and they actually fitted me in, moved me around and eventually I ended up hardly waiting at all. When I saw Consultant he didn’t rush; asked a whole range of searching questions and left me floating home thinking the NHS can deliver when it wants to. But then King’s staff seem to genuinely want to look after patients. Lots of TLC around.
Went to Royal Marsden to try and find help dealing with side effects. Not long to wait in Outpatients – Good – not so good is the hospital’s conveyor belt system. Nurse calls you – shows you in to consulting room. Then shuts door and leaves you there alone, to wait. No idea how long, but in Chelsea I was going crazy after 30 mins,so went to find out why I had been forgotten. Receptionist said brightly “not long” and didn’t get it, but it’s a nasty way to treat us. Same system now at Chelsea and Sutton. Grab something to read whilst you wait. Otherwise, you end counting cracks on the ceiling.
What lovely news that dark chocolate – in moderation – is good for us. Just posted info that came from ASCO (American Society for Clinical Oncology that says so – and you can’t get much better than that
Well done! Stand Up 2 Cancer raised the magnificent sum of £15,700, 222 – and money is still coming in. If your conscience is pricking, go to
and there is still time to contribute to Channel 4 and CRUK’s event. Billed as a ‘kick-ass’ event, parts were a bit raunchy and toe-curling for me, especially Dr. Mike’s hard-hitting advice; but well done for saying it in public. If this is the way to help prevent cancer, it’s obviously the way to go. Now, next year, could they allocate some of the funds raised to help survivors – please? !!
Arrogant NHS medic really got up my nose. Friends saying their Cancer Nurse Specialist (CNS) is wonderful make me think there is something wrong with me – or do others have same problem when trying to get information and help? Yesterday was rung by a CNS; I had tried to get an appointment to see someone about the long term side effects of the cancer drugs giving me Neuropathy. She said it was a long time since I had finished with the drugs. Pointed out that Macmillan report “Cured – but at what cost” had highlighted that these effects could present themselves years later. No answer, but she had been on panel that developed report. Left me smarting at being treated like a child. Pointing out that MD Anderson – acknowledged by most professionals as world’s best cancer hospital – had reams on these effects on their website, ditto ASCO, she dismissed my attempts at ‘googling information’ as of no importance. Finished with her saying “I will let you know if you can see the Oncologist”. What is wrong with NHS that these staff are allowed to dictate our care, and pay no attention when rest of world has research to prove these side effects happen? Why does NHS sweep this info under the carpet, allowing UK to lie at borrom of European cancer survivor’s table? . Went behind her back and got an appointment withour her.
Thanks a bunch, NICE. Today comes announcement that NICE are to impose massive fees to approve drugs. This will hit new cancer treatments hard, especially for those with rarer cancers, where not so many patients will mean less profit for developers. NICE charges will range from £99,000 to a whopping £282,000 – so wonder how many of us will find that a drug which helped us when on a clinical trial, won’t be approved for general treatment?
This came out on a Sunday. What’s that they said about “a good day to bury bad news?”
Yesterday felt very grand; overseas TV crew interviewing me to ask what I thought of NHS. They had done their research, and asked searching questions such as “Why do Britons regard NHS as a Religion?” Good question. Turns out many they had interviewed had extolled how World thought NHS was superb – when they knew reality was different.
Unlike British confrontational TV, they were well prepared with questions re pros AND cons, and willing to listen. But at the end what they came back to time and again was my remark that, during my treatment, cancer survival rates in UK had gone down from 13th in European table to 25th. Set me wondering when we are going to face reality and REALLY set out to make the NHS fit for purpose.
They were also interested in way time between appointments was stretching out longer and longer – kept on coming back to facts, especially when I said I had met up with new specialist in April. He sent me off for physio for my cancer drug induced Neuropathy, saying he needed to see me in three months to see if working. I was eventually given follow-up appointment for October (NHS interpretation of ‘three months! ‘) and two days ago had had another letter to say hospital regrets to tell me that my appointment had been changed to January 2017.
Had such an interesting conversation with a new go-ahead Dutch friend, who is setting up interesting workshops (more when dates are announced). She made me green with envy, describing how in Holland she had to wait 24 hours when she thought she had cancer; next day she went in for tests in the morning, and received the diagnosis that afternoon. Wonder if and when we will ever get near this Utopia?
Below I write about how unhelpful the Parliamentary Health Ombudsman is when dealing with our complaints re bad care in NHS. The Patients’ Association is gunning for them, and taking up a whole raft of complaints – see their website for more.
13.4.16 Annie Anderson (UK) speaking at latest Europa Donna conference (the association of over 40 national cancer reps in and around Europe) presented World Cancer Research Fund data indicating that 38% of postmenopausal breast cancer could be avoided by maintaining a healthy weight, being physically active and restricting alcohol intake. Sensible suggestion was to do this at the time we go for mammography screening visits. For instance, a feasibility study of a lifestyle intervention within a breast cancer screening programme led to improvements in BMI, waist circumference and physical activity. The study also indicated that women were aware of the benefits of a healthy lifestyle, but were less aware of its role in reducing breast cancer risk. Marina Pollán of Spain emphasised the potential impact of rising obesity in Europe and worldwide: research indicates that obese women have a higher incidence of post-menopausal breast cancer, their tumours tend to be larger and more aggressive and can have a worse prognosis than in non-obese women. Too simple for the pompous Big Wigs who run our cancer care, perhaps?
The deputy parliamentary and health service ombudsman Mick Martin has resigned from the Parliamentary Health Service Ombudsman (PHSO). Anyone who has tried to raise concerns about NHS care with this body might have found then obstructive and unhelpful – I certainly did. Their favourite trick was to ask you long questions on points you had already mentioned months before – so they drove you mad with their unhelpful attitude. Good riddance.
Sorry for the actress employed by Macmillan for an Ad. now finds she has cancer. But why use an actress? Why not a genuine patient? And was the actress paid?
WHOA there, all you Geeks who want the NHS to communicate with us by text/email. or other technology.
In theory that’s fine. But surely our family can’t be the only ones that have been cut off 3 times in six months thanks to PLUSNET (meant I didn’t have an Alarm to call Ambulance), found that BT was running a company with invisible Engineers who would swear they turned up to sort out problems, but no-one in the family could ever see them – and then those on Virgin – just look at the first 1,000 complaints on the Virgin Problem page. Common to all these companies is the arrogance with which they treat customers. So before we entrust our life to them, let’s get some European Engineering over and set up the same system as you can get all over the Continent. Theirs works – ours doesn’t.
So what’s the benefit of being in EU – we can’t get their Broadband speeds, not to mention we don’t live as long after cancer.
Things are not good – have already broken my first New Year Resolution: to be more efficient.
Some time ago I received a lovely package from my favourite PR – had fun trying it out, then totally forgot to press PUBLISH when I put my thoughts into this Diary. Have just come across the mislaid copy, so do try this – it’s good, and goes by the unusual name of Docteur Renaud Carrot Renewing Night Cream
Would like to start year on a positive note, but HOMEBASE has got me riled. Way back in August a friend took me to buy quite a lot of stuff; I paid for delivery and when it came there was no soil (don’t know what they think plants need to grow in). Phoned, and was told “you can come and collect it”. Explained I was very disabled, but that didn’t register. Eventually got them to promise a refund, and went to a small garden centre who couldn’t have been more helpful. After repeated phone calls, I get in touch with Head Office. Today they tell me they don’t deal with refunds.
Shan’t be going to Homebase again if that is how they treat disabled.
Anyone who says NHS Admin is overworked, obviously hasn’t tried to contact our local Healthwatch, nor the Cyncal Commissioning Group. Started at 10 this morning, only to find EVERYONE’s telephone had the Answerphone on. Assume they are all out doing Christmas shopping – we have to do this after work, Then find CEO of our Healthwatch works Mon PM – Thurs PM. Nice for some,
Over in rarified atmosphere of Bumbeldom, the Chief doctor at CQC Prof. Steve Field, says GPs have failed. Predictably GPs furious, but Minister Jeremy Hunt comes to his rescue. Field has also said that he thinks his Practice can ‘self monitor’ e.g. doesn’t need an inspection – so he should be OK in 2016 then.
Stands for Living your Life after Cancer – Isabel emails to say now run regular Workshops in South of England. and could be coming to London in 2016. Hurrah! Watch this space!
Thanks to Roy Lillie of nhsmanagers.net who comes up with some very sage comment on current situation in the NHS. .
A month ago the Treasury were flatly refusing to front-load NHS funding. Now, they’ve coughed up.
Fingers crossed that this bunce will keep the dinosaaur creaking along for a few more months – until the next crisis. But as Lillie says, “Years of austerity have hobbled the NHS. Just about every key indicator is going south and the bodged efforts to change the Junoir doctors’ contract have distilled into toxic waste. Hunt is drowning in a mess of his own making.
A nice fat bung from the Chancellor is designed to bail-out the NHS in the medium term and portray the docs as self serving.
Yes, £4bn is not enough but how much is enough? Look at the police and local government and feel lucky, grateful, thankful, relieved… take your pick.
Public Health England will have to learn to be just as useless as they are now but on less money.
The DH, on the other hand, has been irritating beyond belief. This is in their press release. Talking of the £4bn, they say:
“…. additional funding will allow the NHS to offer 800,000 more operations and treatments, 2 million more diagnostic tests, 5.5 million more outpatient appointments and spend up to £2 billion more on new drugs that patients need.”
No! It will allow the NHS to keep the lights on, pay the bills and if we are lucky, invest in turning the Vanguards into operational, replicable, scaleable reality.
The DH press office add nothing to communication, understanding, reality or dare I say truth” Roy, I totally agree. As a journalist, they do their best to fob me off with platitudes, untruths, and have no idea of what is happening in other more advanced countries..
If we are looking into saving money, disinvesting in peripheral bits and bobs that don’t make the patient facing front-line of health care better, smarter and more productive, may I suggest we let the Conservative Party pay for the DH press office.
If we are doing their work, they could, at least, have the decency to pay for it!.
I do agree – but Oh! when I go abroad and get medical treatment, why do I look around and think “if only…”?
Don’t panic. If doctors are on strike and you need A & E – what to do in easy steps is explained in my pos
ts. Tried and teste by me during a previous crisis. https://aftercancers.com/2015/11/what-to-do-if-you-need-a-e-during-doctors-strike/
.17.11.15 The NHS is so much on the defensive that you phone to ask to speak to someone, they automatically ask “is it to make a complaint?” Today, phoned the local Cynical Commissioning Group (CCG) as had heard they have appointed someone to oversee cancer https://aftercancers.com/2015/11/what-to-do-if-you-need-a-e-during-doctors-strike/
services in our area, He has been en poste for at least 6 months but no-one knew his phone number; finally got it, he was out – but am waiting a call back!
11.11.15 Are GPs grown-up or not? NHS England thinks not. First they tell them they have to open 24/7 – perhaps they think they don’t have families? Latest wheeze was to say they had to stay open ‘normal’ hours on Christmas Eve, New Year, etc.
Don’t know about you – but am I going to make an appointment for Christmas Eve – any time that day? I think not. I would expect if I needed to see a GP urgently, there would be an answering machine message telling me how to see someone – but I have better things to do on Christmas or New Year’s Eve.
And while NHS England are thinking up yet more silly schemes – apparently an independent survey says only one in 250 of us want to see a doc on Sunday.
Stop Press – NHS England has just lost a test case; took a surgery that closed on Christmas Eve 2013 to court. Not only have they lost the case. but I would like to know who at NHSE was actually working, and started this in JANUARY 2014? Must be first time NHSE pulled its finger out.
Today’s Daily Mai, in conjunction with Taxpayers’ Alliance, has investigation into greed of NHS Fat Cats. Makes disgusing reading. And highlights how CEOs aren’t working hard enough; one CEO, on a massive salary way awbove the Prime Minister’s, who had time enough to search for a bus ticket, write out an expenses claim, and presumably stapling the ticket to the claim, all for £1.40 !!!!! Who has time to do that these days? They should get on with earning their vast salary and actually run their hospital. Read more (if you can stomach it) on http://www.dailymail.co.uk/news/article-3309596/The-shocking-scale-fat-cat-pay-public-sector-exposed-today-major-Daily-Mail-investigation.html
Been workiing as a Patient Rep for over year, trying to curb the mis-placed ideas of management consultants; where does the NHS find these companies that are totally divorced from reality?
Latest idea is WHOLE SYSTEMS – new way of caring for OAPs. We had to vote on name of two expensive facilites that are being opened; the Management Consultants said “by an overwhelmingh majority” everyone had chosen something like “Whole Systems Integrated Care Facility”.
I reckon Mrs. Bloggs is still going to call it The Health Centre – whatever the trendies say.
Had an informative letter from my lovely Nail Doctor, who keeps an eye on my painfully splitting nails. They are recovering. His very information letter says he also ‘deals’ with Hair – so he could be just the person to tell me what to do with post-cancer hair.
Phone for appointment – finally reach top of queue – only to be told that I need ANOTHER referral letter from GP. “But I thought Jeremy Hunt has said he wants to stop hospitals referring patients back to GPs?”
Who’s Jeremy Hunt?” Says hospital appointments office. See here, dear, is his pic.
Try to keep a stiff lip and all that, but sometimes I want to bury my head in my hands – and weep. Common sense seems a rare commodity when dealing with the NHS. When I ask GP for letter, she almost blames me for “this stupidity” – not my fault – I am just a patient.
Closing Surgeries Currenlally PULSE (the doctor’s magazine) headlines GPs all over UK are giving up. In our neck of the woods two practices closed this summer, and another is threatning to follow. We are herded, willy nilly, into a vast practise with umpteen docs – but still wait three weeks to see a named GP.
This surgery has a Medicines Gauleiter, who wastes hours of my (and NHS time) trying to convince me my pills need changing. Surprise, surprise. Google gives me costs, and the suggested alternatives are cheaper. Refuse to change, and start round of Consultants – who are indignant at their competence being questioned and write strong letters to surgery – I am then phoned up by owner of Practice. Spends 30 minutes trying to bully me on phone. I win – but am shattered. What price GPs being overworked!
Waitrose – what’s happened? Their Online ordering used to be a godsend, but now their website often it won’t let me in, then I have to change Password, final straw was my delivery went by default to an address where I had been temporarily – ages ago. But every cloud – and all that. Through Farmers For Action found a wonderful list of local farmers shops around UK, that deliver. Our nearest is Farm Direct; It delivers, and they only sell fresh, seasonal produce. Real find. farm-direct.com