How do we escape our neglectful hospital?

[geoffh]

Hello, my Mum had radiotherapy recently for a non small cell tumour in her bronchus. Her hospital in Ormskirk/Southport did not want to offer her any treatment despite her being an active 73 year old. After 2.5 months arguing with them I finally paid for her to see a specialist in Christie's who devised a treatment and told her local hospital what to do. Ormskirk/Southport made it clear they resented us getting a second opinion and did not send much information to help the specialist at Christie's. The treatment was intended to be a cure for her tumour and she responded very well. All looked good last year.

Early in January she had a scan which indicated there might be a secondary tumour in her adrenal gland and a small growth in a lymph gland at the top of her lung. Again no treatment was offered and chemotherapy was all but refused. Again we saw a specialist elsewhere by private arrangement and again her local hospital in Southport delayed the referral by over a month. They did not supply all the info the consultant requested and to this date have still not supplied it - nor have we been able to obtain a copy.

The specialist advised chemo and Southport refused to act on his reccomendation, telling me to go out and find another hospital to treat her.

We are now over two months into the six months Southport hospital estimated Mum had to live and still no treatment of any kind.

Mum shows no symptoms of illness and I am convinced she has a fighting chance of longer survival if we could only get her away from her current local health authority. They clearly don't want to use the funds and resources to treat her.

Why is Ormskirk acting this way and what can we do about it?

[EmmaG]

Hi Geoff,

This is the advice we offer in our Lung Cancer booklet. I hope it helps.

If you are not happy with the hospital treatment you are receiving, or

have received, you have the right to complain. If you are unable to

complain yourself, with your permission, someone else can complain

for you(probably a relative or close friend).

There are two stages to the NHS hospital complaints procedure:

• Local resolution.

• Referral to the Ombudsman for independent review.

Local resolution

The majority of complaints can be efficiently dealt with in this way.

If possible, tell a health professional, for example, doctor or nurse,

of your complaint. They may be able to address the problem straight

away. If you don’t want to talk to someone who is directly involved

with your treatment then you can telephone, email, or write to the

hospital’s Complaints Manager. This way you are guaranteed a

response from the Chief Executive within 25 days. It is important to

keep a record of a complaint and you can do this more easily if it is

in writing.

Referral to the Ombudsman for independent review

If you are not happy with the outcome of your complaint, you have

the right to ask for an independent review. Who you should contact

varies depending where in the UK you live:

Parliamentary and Health Service.

Tel: [phone] (England)

Scottish Public Services Ombudsman.

Freephone: 0800 377 7330 (Scotland)

Public Services Ombudsman.

Tel: [phone] (Wales)

Northern Ireland Health and Social Services Councils.

Freephone: 0800 917 0222 (NI)

It is important to remember that complaining should in no way

harm the care that you receive.

[geoffh]

Thanks for your information. I have already written to the Oncologist directly and had previously written to Mum's GP complaining about the inefficiency of the Ormskirk/Southport cancer team, (scans and appointments can be up to 2 months apart).

Good treatment centres have patient healplines - like the Patrick Room at QE Hospital in Birmingham, or the helpline at Christie's in Manchester. They have both advised us to get Mum to anotehr hospital, but Southport will not help us do this.

What i actually want to do is immediately put Mum in the care of the specialists at Christies, but her local hospital will not support the referral.

[JoannaHoyle Roy Castle in reply to geoffh]

Hi Geoff

I am sorry to hear about the situation, especially as this is my local hospital. .I know Christie Hospital as an excellent centre so I understand why you would want your Mum to be treated there. I cannot add much to what Emma and Bill have said but have you tried to contact the PALS team at Southport Hospital? They may be able to offer some further advice. I hope you can have this resolved as quickly as possible. Best of luck Geoff, keep us posted and take care. Best Wishes Joanna

[Billculbard]

Hi Geoff

I'm afraid I couldn't give you any better advice than Emma has. I think if I was in your position and still getting nowhere after all you've done, I'd consider contacting my MP immediately. Sometimes they can give the required push, or at least get a satisfactory result. Good luck! Bill

[geoffh]

Mum has now been admitted to Southport because of breathing difficulties and they have admitted her so she can have oxygen. She's been there a week and is now on her third ward awaiting another move to yet another bed. Nobody will tell her or us what they are treating her for in specific terms, we just get the usual fob-off "speak to the consultant", but consultants only visit twice a week.

Mum is terrified and the treatment is inhumane. It just proves one thing: we should fund centres of excellence like Christie, (maybe Clatterbridge) and close down the incompetent local specialist treatment centres, who are more dangerous than helpful due to their criminal under-resourcing.

[Hidden]

Geoff,

I am so sorry to hear your story. it seems to me that despite us having an 'NHS' it is still a post code lottery to the treatment we receive.

Good luck in your quest and thank god we have the support of this wonderful organisation (Roy castle LFC). Wishing your mum well. Let us know how you get on.

Lyn x

[geoffh in reply to Hidden]

The story just gets worse and worse. Despite much advice from other doctors and private consultants Southport hospital have all but refused to give Mum chemo. They got her so wound up with stories of how chemo will kill you just as fast as cancer that Mum is wracked with anxiety attacks and has made herself very ill with worry. The conflict between us fighting for her life and Southport just wanting her to go away because her treatment would eat into their resources has actually made her just as ill as the advanced stages of the cancer would. It has also given Southport every excuse they needed to withold treatment. The radiographer refused to see her on her last stay in Southport Hospital, so she was moved to a short stay ward at a local hospice. We want her medical records so we can transfer her to Christies, but have been refuse the diagnosis documents. Without a formal referral by Southport tghen no other hospital can take her on, but Southport are obstructing a referral. I have not trusted the Ormskirk/Southport department from the very start, but it is Mum.s local hospital and she wanted to stay local. I know false statements have been recorded in Mum.s files at Southport because I have had extracts read to me over the phone by ward staff.

I am resigned now to having to let my Mum just die and then sue the arse off everyone I can get to at Southport Hospital. Of course, as soon as Mum dies her medical files will dissapear from there forever.

[keno25 in reply to geoffh]

Hello geoffh, it's so sad about your mum & how's she's been treated.. My mum only had months to live from her lung cancer but she was given chemo to prolong her life they said.. If we could turn the clock back we would of declined the treatment as it's not very nice to see someone who is dying suffer even more than they have too.. They made a right mess of her arms cause of the needles, They messed her about with appointments, they give her the same treatment twice by mistake & the doctor who told me mum she only had months to live after the test results had come back showed no sympathy at all, so cold the way he told her.. we did complain & never saw that doctor again. thankgod.. There was one nurse who showed kindness to my mum & her name was Jill.. If i got cancer myself i'd take my chances i think after such a bad experience with Nottingham City & Queens Hospitals.. Also i think if your over a certain age, they are not interested in curing you..

[geoffh]

Things just get worse and worse and worse. The hospital handed my mum over to a local hospice saying there was no more they could do. The hospice found mum had contracted a bad chest infection which the hospital had not diagnosed and not medicated. The hospital put my Mum on strong tranquiilisers "to help her breathing" -- utter nonsense!!! Mum is so drugged up on these she doesn't remember much, yet she has no pain, no symptoms of the cancer other than a chest infection. She looked like a zombie on deaths door. I went to stay for the weekend and stopped the tranquilisers and she improved substantially. Are these idiots determined to force my mum into her mahogany box or what? Their attitude to her AND US is absolutely inhumane!

[keno25 in reply to geoffh]

The staff see this time & time again i imagine so they switch off their emotion & just see it as a job.. Sad but true, you may come across one nice member of staff if your lucky.. The chemo ward is like a cattle market, one in & one out kind of thing.. Sorry about you mum Geofffh.. They did the same to my mum drugged her up, My dad stayed with her the last 3 days of her life.. She was in hospital for 1 week before dying there, i wish she stayed at home instead of going there, doctors advice.. The hospice was full, so my mum had to stay on a ward.. All the money that is raised for cancer research you'd think some of it would go to helping care for those in hospital & so they could be treated with love & care during their time of need..

[geoffh]

My Mum died a couple of weeks ago. I have lost all faith in our NHS even though I spent 30 years as an architect specialising in hospital design. I have now withdrawn from healthcare work.

In the end my Mum was nursed at home by the family. We refused the involvement of the macmillan nurses because tehy were utterly awful in all their policies, tactics and methods - true devils in a tragic situation. By contrast the District Nurses were FANTASTIC. the whole team gave us round the clock support and were always available within ten minutes of a phone call. They supported the whole family and led thrtee middle aged sons through the bitter trauma of nursing their dying Mum for over a week. The team leader came to the funeral and will forever be a cherished friend for us all.

All our family had spent many years rasing charity money for Souhtport Hospital and the macmillan nurses, and were utterly let down by both. Now i curse their names.

[keno25 in reply to geoffh]

Sorry to hear about your mum Geoffh.. I don't blame you, the system is wrong & corrupt..

At least your mum was nursed at home, that would have given me great comfort if that was my mum.. You did her proud.. I'm glad you found some outstanding caring nurses..

I no longer give to cancer research, it's a cop out.. The cure is out there i believe in Hemp Oil etc but we are over populated & cancer profits the global elite.. They don't want folk cured that would not benefit them..

Take Care!