Fobbed off yet again by hospital

I had cancer over 20 years ago and now have bladder cancer. The consultant for the bladder cancer is a woman, very switched on and organised and I am happy to believe what she says and trust her judgment. It was also thought that I may have lung cancer (NEVER smoked!) and the rather dismissive male doctor said I would need this specific x ray and that he would contact me and discuss the results. Had the x ray and after 2 weeks of not receiving a letter or phone call from the specialist, I naturally was getting more worried and rang only to find he had "forgotten" to post a letter to me. Said there was a shadow on the lung that needed to be watched. Said sorry on the phone but no letter of apology and result is , they say that they need to check it but nothing is happening, not getting any bigger etc. You will understand why I dont trust a word he says and think he has behaved badly and in a cavalier manner. Wrote to the hospital regarding this , because I dont want anyone else to go through this and miss important treatment. My other gripe is ageism! Whatever you have a problem with , you are told you should expect that at your age. Why??? I had a very dear friend I met out walking when I was 40 and she was 82. She was very fit, walked , played a bit of tennis etc lived on her own and took no medication. When she had hip problems I took her to the hospital and she was in a wheelchair. The receptionist said "what medication do you tgake" to which Marjorie replied "None" The woman looked at me and said does she have her medication with her?" to which I replied"Ask her yourself. She is sitting there" She then asked Marjorie when she had been in hospital and her gp etc. Marjorie had only been in a nursing home to have her two children, took no medication, her gp had retired and she did not know the name of the new one!" I realize that not many people are as fit as her, but it is good for people to learn toat being old does not necessarily mean being ill!

MissA I know from other threads you are no coward you have battled on no matter what life throws at you. The biopsy will put your mine at rest and is the best way to get a definite diagnosis. They will make sure you won't feel anything and a nurse will hold your hand and talk to you while having it done if you ask.

The main thing is you will be getting the help you need now and for the future. 💐

Well, sort of.
He did mention a liver biopsy, and I'm a terrible coward!!!

That’s great news for you.

MissA that brilliant. Hope all goes well.

This thread must have worked some magic.
My long awaited appoinment with the the liver man came through today. 🙂

Keep going through PALS and also write to the Chief Executive of the Trust. If you raise a formal complaint they will have to include it in one of their meetings. and they don't like complaints!

Glad to hear you have got an appointment Hazbeen it can be a minefield navigating all the different doctors and departments when you are first diagnosed even more so during covid. I hope now that you get regular visits. MacMillan are an excellent form of support, they can answer any questions you may have and in some cases make calls for you once you have been referred to MacMillan nurses, they will be there for you at the end of the phone whenever you need them, it may be worth mentioning it at your next visit to hospital. Also might I suggest that you write a list of all the questions you have to take with you. When I was first diagnosed my head was in complete turmoil of emotions and questions, best to try and make some order of them if you can.
I’d be happy to help going forward in anyway I can if you want to message me, I have been on this rollercoaster ride for four years now so if you have any questions, if I don’t know the answer I can probably point you in the right direction.

Any issue like should be reported to Healthwatch who are brilliant. So pleased PALS helped in this instance and hope your support will be much better from now on. Have you got a 1to1 nurse now you can call anytime? Also you can have a referral to Hospice who will be your in between person and make sure everything goes to plan. My Partner has blood cancer so we are on a similar journey but with palatine care as he has declined treatment except for 4 weekly blood transfusions ?

Hope you got your blood test in time - honestly things are getting ridiculous around here (Berkshire) hope you are ok ?

The NHS a is truly broken and it folks like you who end up struggling. There is obviously a breaking point for all staff and departments but seems so unfair when people in your situation don’t get the treatment they need. My disabled granddaughter has similar issues - physio off sick since August and no one else can take on her case as they’re all stretched to capacity so months with no treatment and none in the foreseeable future. Not the same seriousness as your case but still very frustrating for everyone. She sometimes says “I don’t think anyone cares about me anymore”. Not good when you’re 15 and in a wheelchair and in constant pain. Hope things soon improve for you. Fingers crossed.

Are there any support groups you can share your worries with? I know this is not going help to get your appointment, but sometimes just letting off steam with people who have the same condition as you and understand the frustrations.

That said, your GP is your first point of contact and should really be chasing the hospital for the medical care you need, or as an alternative see if another hospital can accommodate your needs.
I think it is outrageous that you are left hanging on with no immediate prospect of seeing a consultant. I wish you well.x

Oh good.
They lost my last lot although the one that goes for further testing was ok.
They are always 'losing' samples somewhere in the system.

Hazbeen, that's great news about your blood test. Hopefully things will now be back on track for you. Please let us know how you get on.

This strikes me as being out of all order, but I don't live in the UK, so my advice may not be relevant.

Here you could demand to be transferred to the oncological dept. that does have a consultant who specialises in your disorder.

Are there no associations for cancer patients and their families in Britain? If there are, get in touch with the most relevant one immediately and ask what they advise.

HAZBEEN very glad you had the blood test today. Hope all goes well next week.

Similar system in this area Callistemon, except our surgery will only book 4 weeks ahead and you have to crawl over hot coals to get one! The testing at our local hospital is appointment only and they were booked up into December!
Luckily I managed to contact the surgery (emailed them then phoned then went in!) and have had my blood test this morning! I did have to resort to pleading but it was the "nice receptionist" on duty!
After I speak to the consultant they put a request on the system to be done before my next appointment, then about a week later I normally receive my appointment date and it is down to me to arrange the test so the results are ready.

You should be on a schedule for a blood test, why are you not given an appointnent for your next one at the time you have one done. I have an appointment for 8 months ahead!

In this area, blood tests are carried out either at the GP surgery
and what a fight it is to get an appointment or with a peripatetic phlobetomist who is not here on a suitable day for the tests to get to the right place.
The hospital sends the labels, the rest is up to the patient to sort.

The surgery won't give an appointment more than six weeks in advance - even though the wait for a routine appointment with a GP could be 8 or 9+ weeks ?

All I can say to that is that Macmillan also varies wildly on the kind of support you can expect.

Make LOTS AND LOTS OF NOISE. Get relatives and friends to add their voices, too. Not good enough. Too often we feel somehow apologetic about fighting for ourselves - if that's you, I hope you can get over it, because you deserve better.

Maybe someone;s has suggested it already, but if not, Please get in touch with Macmillan cancer support.
When I had cancer they were automatically informed by the hospital and I was allocated a contact support worker. Luckily my treatment was pretty straightforward and everything was done very smoothly and quickly. But I knew I could have leaned on the Macmillan contact if necessary. They will be able to give you advice re your condition and treatment and know how to ensure that you get the treatment you deserve.
Sincere good wishes for a complete recovery.

Wong I hope you get a proper diagnosis and receive the treatment you need urgently.

Good luck.

I had an issue 20 years ago about DHs surgery being cancelled last minute (he was actually in theatre having had pre-med). I contacted the local newspaper with details. Printed front page next day and phone call from Chief Exec fir meeting with him, Head of Nursing and Surgeons . Boy did they jump. The actual surgeon was grateful I had taken action as he was fed up with lack of theatre staff. That was the problem, staff covering main hospital and separate maternity unit and some on naternity leave. Hospital had not taken on staff to cover. Use your MP and press. You should be on a schedule for a blood test, why are you not given an appointnent for your next one at the time you have one done. I have an appointment for 8 months ahead!

Do people not read the full thread?
I’m so happy to hear you have an appointment for next week HAZBEEN
Any luck re. the blood test?

Sorry HAZBEEN you are in such a bad situation. I have a similar situation. Was taken in to hospital in May as an emergency, during which time it was found I had a 'suspect' lymph node. Discharged two weeks later. Had a biopsy which proved inconclusive, then it al went completely wrong. I am having surgery on Wednesday to remove a lymph node as a biopsy. Then another couple of weeks while it is decided treatment plan. I now have several infected nodes under my armpit and on my chest, according to a scan I had! Great. Six months to actually reach a potential diagnosis for my lymphoma (type of cancer). Still not getting treatment. I have lost 14 kilos in weight and have had breast cancer before and have a real raucous chesty cough! What a shambles our NHS is in. I have had appointments cancelled and then told I didn't bother to turn up. Its scary, I'm not sure I'm going to get the right treatment when they do eventually reach a conclusion. I'm noty sure it is doctors and nurses at fault. I am convinced it is the chaotic, disorganised admin staff who really don't give a toss about us patients. Although I have had promises from cancer nurses and haematology staff that they will call back and they haven't. I hope you do get better treatment in the future HAZBEEN and successfully come out the other side. Sending virtual cuddle.x