Have we stopped listening to older people?

The headline in The Guardian on Tuesday 13^th February said,

      “Francis Report shows we have stopped listening to older people.”

The Francis Report, published on 6^th February 2013, sets out 290 recommendations for improvements in the NHS. This was in response to the neglect and unacceptably high death rate in the Mid Staffordshire NHS Trust hospitals.

One of those recommendations is that there needs to be more of a culture of care in the nursing profession.

I wonder how many experts it took to come to that conclusion. I hate to repeat myself but two years ago I was screaming - literally screaming because my Mum was being neglected! I was screaming about the fact that nurses in charge of caring for my mother, were not caring. From where I was sitting, standing or pacing up and down, they were not rushing around caring for other patients either. They were propping up their work station, chatting, drinking coffee, or they were nowhere to be seen. I accept that this was only one ward in a huge hospital but I saw it happening again and again and it infuriated me.

I blogged about my series of official complaints two years ago. I even got as far as two telephone interviews with the Chief Executive of the local NHS Trust. He had the grace to be shocked by my revelations, or perhaps this wasn’t grace. Perhaps it was political distancing. Was his reaction a part of the culture of fear highlighted in the Francis Report?

• Let us stop, as a nation, being afraid to complain.

• Let us start, as human beings, to listen sympathetically to the needs of others.

• Let us hope that if we witness such neglect in the future, we can report it in the confident knowledge that there will be no repercussions on us or on our elderly, hospitalised relatives and that someone will listen, someone will care and someone will do something about it.

[I shall now step off my soap box and stop shouting... for the time being.]

Ladies who Lunch again... but for a good cause

Yesterday I had a fabulous day out. It was a fund raising event for LOROS, our local hospice. Why aren’t hospices government funded? I’ll never understand that. Without voluntary donations LOROS would have to close down, but with the kind of support they had yesterday they’ll be around for a long time yet. Over 750 of us shuffled our way into The Great Hall at Walkers Stadium for LOROS’ Annual Ladies Luncheon. In fact, The Great Hall wasn’t great enough. There was an overflow in the next room with a video link for the speeches and auction.

The speaker was Ann Widdecombe. For those of you who live outside the UK, Miss Widdecombe is a formidable lady, a retired MP who last year became our favourite Saturday night entertainment. She appeared on Strictly Come Dancing and was continually voted in by the public in spite of the judges declaring her to be a “de-sas-ter, dah-ling!” Her dancing skills may have received record low points, but as an after dinner speaker she scored a unanimous 10 out of 10 with us. She has perfect comedy timing, holding us enthralled in a story one minute and laughing out loud another. What an entertainer!

The food was good too. Here’s my starter...

...but I’m afraid that I was so busy chatting and scoffing that I forgot to photograph the rest of the food. All I can say it that it was delicious, which is no easy task with over 750 to cater for.

LOROS, or the Leicestershire and Rutland Hospice to give it its full name, is a specialist centre providing skilled nursing and medical care, including physiotherapists, occupational therapists and social workers. Lady Gratton, the President, told us that many patients arrive expecting the hospice to be a sombre, serious place but what they find is quite the opposite. The hospice provides emotional, spiritual and social care for both patients and their families. It’s not about preparing to die, but about living for the day.

It sounds like LOROS offer the same high level of care that my mum was given at Harley Grange Nursing Home, the same high level of care that we expect our hospitals to provide... how sad and distressing to learn that in many cases hospitals fail to do that.

Around the time of my mum’s death I had to step back from my hospital campaign. Sadly, but not surprisingly, there are still problems. People are still stopping me in the streets to tell me of yet another appalling case experienced by an elderly friend or relative in hospital. Can somebody out there answer me this one question?

If LOROS can look after our frail elderly with care and dignity, and if Harley Grange Nursing Home can look after our frail elderly with care and dignity, then why can’t our hospitals?

From Blog to BBC TV News Appearance

The other day a TV camera crew came to our house... well it was actually one TV cameraman with his portable camera but it was quite an experience nevertheless. We did light checks and sound checks and, with a little soft lighting, he converted our living room into a desirable bijou residence. I began the interview in a stilted manner, very conscious of what I was saying, but by the time we reached the part that they actually used I had warmed to my argument and was in full flow. The man knew how to do his job. I was delivering sound bites to fight for.

I’ve included a link to the BBC TV news programme but in case that is no longer available I’ve taken a photograph to show you what I look like when I’m in full flow.

There’s also a photo of the TV cameraman himself. He was taking shots of letters and photographs just in case they might be needed. In total he took 18 minutes of film although the piece they used was only a fraction of that.

Progress is moving along slowly. 6,500 nurses and healthcare workers will receive a nursing care refresher course. You can read about that in this newspaper article from the Leicester Mercury. I was taken onto Ward 2 at the Leicester General Hospital last Friday and shown the changes that had already been introduced regarding raising the profile of the nurse in charge – the big red badge scheme - and making hourly checks on all patients. And there’s a meeting next Tuesday at Leicester’s Town Hall to further discuss the issues regarding hospital complaints. I’ll be there and, as I’m sure you’ve guessed, I’ll be blogging about it.

Had it not been for this blog I doubt my complaint letter would have got anywhere near this far. I was demanding that changes be seen to be made but the hospital had merely sent a standard acknowledgement offering me a written report within 25 working days. A written report was not going to get changes either made or seen to be made. Nobody was really listening to me. Then I remembered The Leicester Mercury. They had picked up my blog postings before for their First Person feature and, as I anticipated, they were very interested to take up this issue. Once they were on board my complaint grew wings... and now it’s well and truly flying.

So if anyone tells you that keeping a blog never leads to anything worthwhile, don’t believe them.

People are Frightened of Complaining

They say that the British are bad at complaining. We’d rather sip at cold soup than ask the waiter to return it to the kitchen, but when it comes to our health care we should be able to speak out. Since I sent a letter of complaint to the Leicester General Hospital about the negligence of my mother I have been amazed by people’s responses.

Many comments were along the lines of, 

“You are brave. When something similar happened to my mum I didn’t dare complain.”

Some said things like, 

“I do admire you. I was so exhausted by the experience I didn’t have the energy to complain.”

Others have made less encouraging comments like, 

“Well done for putting your head above the parapet but rather you than me.”

I don’t often feel passionate enough about an issue to raise my head quite this high but care of the frail elderly is one issue that I can’t ignore.

Readers of my blog will know that over the last few years I have, unfortunately, become a regular visitor of the Leicester Royal Infirmary, especially the Osborne Building. I have always been impressed by their high standards, particularly in the Bone Marrow Unit and the Haematology Wards. But seeing these areas of excellence has shown me that hospital wards can work and has further highlighted the low standards of care experienced by my mother at the Leicester General Hospital.

So has putting my head above the parapet done any good? I hope so. I have had several meetings with members of the Leicester NHS Trust, including Malcolm Lowe-Lauri, the Chief Executive, and what’s more they’ve listened to me and they’ve taken on board the two issues where I felt my input could make a difference.

To ensure that on each shift there is an easily identifiable nurse-in-charge working alongside the ward team.

To ensure that the hospitals’ complaints procedures are easily accessible and fear-free.

The first item has already been addressed. The Trust has initiated a big red Nurse in Charge badge to be worn by the Nurse in Charge of each shift. They have instigated daily Matron ward rounds at visiting times to ensure visitors and patients see the Matron and this is also expected of the Nurse in Charge.

The second item is not so easy. I’m still unclear about the difference between PALS and PILS but apparently PILS is the department to approach with complaints about Leicester hospitals. It stands for Patient Information Liaison Service and has a Freephone number 08081 788337.

I’ve also had a meeting this week with my local councillor, Andy Bayford, who is Chair of the Leicester Health Scrutiny Committee. (Yes, I have been very busy!) Cllr Bayford has promised to include the issue of hospital complaints on the agenda of his next Health Scrutiny Committee Meeting and I’ll be there to listen to the discussion.

But the big problem of fear still exists and I do understand why. I was harassed by the nurses the day after I made my first formal complaint, but my mother was hungry and dirty. I couldn’t stand by and do nothing. Malcolm Lowe-Lauri has made a pledge to address this fear. I hope he’s successful.

We all have a basic right to complain. We should be insisting on zero tolerance to neglect in hospitals because if everyone who is affected complains, then together we will make a difference.

   

A Hospital’s Ivory Tower

Solid wooden doors of polished oak, coffee served in china mugs. I’m no longer visiting ward 2 at the Leicester General Hospital. I’m in the domain of hospital management, the hospital’s ivory tower.

The Director of Nursing has invited me to meet with her. This is not to discuss my mother’s harrowing experience of hospital neglect which I wrote about here in my previous blog post. I’ll be meeting with the Board of the Trust to discuss that at a later date. This is a fact finding meeting to enable me to make sure that lessons really will be learned and changes really will be made.

The following day I have a telephone meeting with the Chief Executive of the Leicester NHS Trust. I have been trying to make contact with him since I first sent my complaint letter. We have a productive discussion around the two areas that I have identified, two areas where I am hoping that improvements can be seen to be made and can be monitored. The planning is still in its early stages but the two areas I’m targeting are:

Item 1:  To ensure that the nurse in charge of a ward is visible and available to both patients and visitors during each shift. 

Item 2:   To ensure that complaints are treated with urgency, respect and confidentiality.

The words are easy to type. The task is far tougher. I’m even having problems working out who is in charge of a hospital ward. I’ve been told that it’s a matron, a head nurse, a ward sister and/or a ward manager. So who exactly do I insist is visible and available to both patients and visitors? I’m starting to suspect that this is going to be a Kilimanjaro-style uphill struggle.

Item 2 proves to be even more of a problem. A complaints service must be respected by hospital users and not feared as it is by so many of the people who I have spoken to since my mother went into hospital. I’ve got to make sure that I fully understand the issues and ask for improvements that are demonstrable and quantifiable. Only then will this campaign succeed. I’m hoping to meet with the department as soon as possible.

Like I said, it’s a Kilimanjaro-style ascent, but I’m putting on my crampons, my oxygen mask is checked and packed, and I’ll keep you all posted as I climb.

    

Care for the Elderly Campaign

Thank you The Leicester Mercury for launching this campaign here. An abridged version of the following article is featured on pages 6 and 7 of today’s paper. 

(In case you don't know, The Leicester Mercury is Leicester’s excellent, local newspaper.)

I have transcribed below the full story of my awful experience_­, including the failure of PALS (Patient Advice and Liaison Service) to deal with my complaints.

I am sickened by the appalling treatment experienced by my mother during her recent stay at the Leicester General Hospital. I have spoken to many people in the local community about this and sadly my mother’s case would appear not to be an isolated one. Changes need to be made. Future patients must be protected from this negligence.

My mother was admitted to the Leicester General Hospital in January 2011 with what we now know to be a large, inoperable tumour in her oesophagus. She is 88 years old with limited mobility and, due to her condition, was unable to even lift her arms up. She spent several days in the Emergency Medical Unit. She was immobile with a drip in her arm. The buzzer by her bed was broken. No one came when she needed to go to the toilet. She cried as she told me how she was left sitting in her urine for the best part of her first night there. When I visited on her second day in the ward, the nurse who was meant to be responsible for her didn’t even know who she was or why she was there.

Following the diagnosis of the tumour she was moved to Ward 2. There ensued a catalogue of neglect and I have chosen the following to illustrate my concerns:

• My mother picked up a diarrhoea bug in Ward 2 and was ill with this for two weeks. She lost a lot of weight and, especially as she is unable to eat any solids because of her condition, she became severely mal-nourished. I kept asking for her to be seen by a dietician but this took well over a week to organise.

• In spite of my continual complaints, her body smelt and she was left wearing nighties, vests and pants that were stained with faeces.

• The consultant prescribed steroids to be taken each morning but on the second day the pills took eight hours to come up from pharmacy.

• The consultant said that she must put her swollen feet up on a stool yet it took two days for the nurses to produce one for her. I asked the nurses on several occasions for a stool and one nurse was even so rude as to roll her eyes and turn away from me.

• A member of staff tipped a full bowl of soup over her but nobody would clean it off her feet and slippers. It was left to a visiting friend hours later to clean her up.

• A doctor made such a mess of trying to insert a needle into her left hand that he caused the hand and arm to swell to such an extent that she had to have her ring cut from her finger. It was still swollen three weeks later. The consultant tried to tell me it was caused by a canula that had moved around but this was not true. They never managed to fix one into that hand.

• I made a formal complaint to PALS, the Patient Advice and Liaison Service (I later discovered that it was in fact PILS). They organised a meeting for me with the consultant and the Ward 2 nurse-in-charge. When I turned up for the meeting I found my mother distraught, sitting in her own faceas, half-undressed. She had been pressing the buzzer for 45 minutes but no one had come. I repeatedly shouted for a nurse but there were none. After a further 5 minutes the consultant arrived, found a nurse to clean my mother and took me into a meeting room. I was satisfied that he had put right all my complaints regarding her medical care but the Ward 2 nurse-in-charge did not attend the meeting and by this time I was even more concerned about my mother’s care.

• I made a second complaint to PALS (or PILS) but received no further response from them. I did, however, receive a response from members of the nursing staff who complained to me, in front of my mother, saying that I should not have reported them.

By the end of January my mother’s general health and morale were so low that I knew I had to remove her from the hospital or she would die there. 

She was finally discharged from the Leicester General Hospital on 3^rd February, 2011 and is now in a lovely nursing home where they are not only caring for her original medical conditions but also for the problems caused by the hospital’s negligence. These include bedsores on her bottom, heel and elbow, an infection in her eye duct and a chesty cough. The bed sore on her elbow was assessed by the hospital as ‘red’. In fact, it was so bad that the nurses at the home spent over a week draining infected fluid from it.

I have written to Malcolm Lowe-Lauri, the Chief Executive of the University Hospitals of Leicester NHS Trust, informing him about this negligence. I have asked him for a promise of changes to be made. I have asked him to inform me of these changes as and when he makes them. Thankfully my mother is now in a caring and safe environment, the sort of environment that I used to think was offered by an NHS hospital. I would like some reassurance that the Leicester General Hospital can provide that environment for future patients.

I am more than prepared to continue with this complaint on my own but, sadly, I know that there are many other people in Leicester and Leicestershire who have had similar experiences. Some have told me that they were wary of complaining. Others have said that they were too exhausted with the worry of watching a member of their family being treated so badly to complain. Maybe as a group our voice will be louder. I am willing to organise a pressure group in Leicester to see changes made.

If you would like to add your name to the list of people supporting this campaign then please let me know in Comments below or email me on rosalind.kathryn @ googlemail.com. Thank you for your support.

Hospital Negligence – the start of a campaign

If you have access to a Leicester Mercury newspaper tomorrow (Saturday 19^th) or Monday then do please buy a copy because it will feature an article promoting my campaign for improvements to Leicester’s hospitals. I will be posting up the progress of the campaign as it develops. If you’ve had a bad experience in a Leicester hospital and want to join a pressure group to ensure that changes are being made, then please let me know. The pressure group will be set up and run with the support of Sir Peter Soulsby MP.

My Radioactive Week

Once the Leicester Mercury have launched the campaign I’ll be posting up more details, and discussing in more depth, the issues that I’m most concerned about regarding our hospitals, but for now I’m preoccupied with a radioactive week. 

It all began with newspaper reports about Monday night’s massive solar flare. Apparently radioactive material will be blasting towards Earth sometime today or tomorrow. In 1989 a similar event knocked out a power station in Quebec. Let’s hope it doesn’t do anything too horrible this time. I must admit to being rather excited about the prospect of it sending the Northern Lights our way. That would be an extraordinary experience, to see the aurora borealis from our back garden. I love looking at colours in the sky, not fireworks. I can’t understand why people enjoy having gunpowder exploding above their heads, but show me a rainbow and I’m ooohing and aaahing like a drunken sheep.

I’ve always loved rainbows. I blogged about them here but rainbows now remind me of the other radioactive part of my week. On Tuesday Mum started her five days of radiotherapy. In the entrance to the treatment room there is a large picture featuring a rainbow. It’s in pastel colours and has a peaceful feel to it. I don’t suppose Mum has noticed it. She has other things on her mind but while I’m sitting and waiting for each radiotherapy session to be over I’m looking at that picture and hoping it holds a promise of better things to come... and I can’t help thinking that if radioactivity can knock out a power station then it can knock out my Mum’s tumour too.

Please join my campaign for improving hospital conditions in Leicester. Either comment below or email me at rosalind.kathryn @ googlemail.com. Thanks.

    

A new story idea...

... but will it appeal to a foreign ear?

Before I launch into my tirade about UK picture books, I’d like to thank everyone for all your kind messages and queries regarding the many health issues that we’ve been struggling with lately. I’ve included an update at the bottom of this post.

And now for my tirade... I love it when a new story idea appears. It’s hard to say where they come from and sometimes it’s best not to analyse it but somehow, amid all the worry over Mum, I have just completed a new children’s picture book. My critique group loved it. I love it. It’s about to be brave and venture into the big scary world of UK picture book editors. They may not love it as much as we do. This could possibly be because they view picture book manuscripts in terms of income potential. In other words, will it appeal to foreign publishers?

I’d like to think that my writing could be loved worldwide but I’m afraid that a lot of it contains humour and it would seem that humour does not travel well. To make matters worse, I recently read a report saying that a number of countries are now favouring home-grown writers over foreign ones. You can’t blame them but why can’t we do the same? I know that publishers have to make money and money is made from foreign sales but it would be refreshing if we were encouraged to write for UK kids in a style sympathetic to our humour, our interests and our culture and not have to worry about worldwide markets.

Health Issues Updates: 

I have made an official complaint to the Chief Executive of the Leicester NHS Trust regarding the negligence experienced by my mother while she was in the Leicester General Hospital. I have asked for changes to be made and for me to be kept informed of these changes. If you have a personal interest in this issue and would like me to keep you updated then please contact me here. 

 Mum is about to start five days of radiotherapy. It’s palliative. Each session will be for only two minutes but they’re hoping that this will be enough to shrink the tumour. We hope so too. 

Rod’s resistance is still very low even though it’s now six months since he had his stem cell transplant. In the last two weeks he’s picked up a nasty stomach bug and a chesty/sore throat bug. He’s hoping that very soon he’ll be well enough to potter in the garden. I hope so too! 

Important point: I’d like to add that over the last few years both Rod and Mum have received first class care and treatment from all the staff at the Leicester Royal Infirmary Oncology Department. They truly are an excellent team of professionals.

  

Green shoots

Mum is finally out of that dreadful Leicester General Hospital and in a lovely nursing home called Harley Grange. They are not only caring for mum and her illness, they are also tending to the infected bedsores that were caused by the absence of hospital care. To all those NHS people who follow my blog and have urged me to make a formal complaint about the hospital’s negligence, a strongly worded, two pages of A4 will be in the post tomorrow.

Rod succumbed to a nasty tummy bug last weekend and, as his resistance is so low due to the stem cell transplant, it’s taken the best part of the week for him to recover.

And on Monday I pulled something in my back and have spent the week fighting to get mum discharged, moving her and sorting and labelling her things, in a fugue of pain, paracetamol and codeine.

But Mum is now in a caring and safe environment, the sort of environment that I used to think was offered by an NHS hospital. Rod is on the mend and for the last few days has taken over the cooking, cleaning and general running of the house. My back is starting to ease and I’ve just taken a slow walk down the garden where there are green shoots starting to appear.