DSis so ill - NHS doesn't care

[Worriedandpowerless]

Regular user NC.
My younger sister is in her late fifties and has been unwell for about 6 months. First went to her GP in October and was repeatedly sent away. Not the type to bother them.

Over the last 10 weeks she's lost over 3st, doesn't leave the house, in constant pain, vomiting, and now sleeps all the time. It is clear she's very unwell and getting worse fast now.

GP finally took her seriously 8 weeks ago and sent for some basic bloods and scans, which identified a possible cause - referred on the NHS and was told the first appt was Aug 2023. She doesn't have much money but paid for a private initial specialist consult and was referred back to the GP as the finding wasn't actually serious enough to be the cause of her problems. I genuinely think if we'd have waited for the NHS she'll have died waiting (might still do).

Pain and all got worse so her GP did then refer on the '2 week' cancer pathway which actually just meant a telephone consult at the end of 2 weeks, with tests booked for 2 weeks after that. Still waiting for the results. Mean time bloods came back to her GP and were very concerning so she was told to get more bloods... You guessed it, another 2 week wait!! She has another diagnostic test booked for 2 weeks time.

None of her care is joined up and she's never actually seen the NHS specialist in person. A nurse saw her as part of a test this week and mentioned she was dehydrated but did nothing about it.

I'm not sure what the point of this thread is. I'm terrified she is going to be one of those cases you read about that she either dies waiting for various tests or they diagnose something very serious and she's deteriorated so much it can't be treated.

Does anyone have any experience or advice? I don't think I can get the NHS wheels to move any more quickly but I could use my life savings to pay for a private clinic where they just do all the tests and get the results in days - does this exist? What else could I do?

It is appalling how much she and you have had to fight to get a doctor to take her seriously. There must be some recourse for that. I hope they move quickly for her now.

Sorry to hear this. I hope that a definitive diagnosis can be made soon and treatment started. It is sad that you have had to battle to get this far.

So pleased that you both have finally been heard. I hope a treatment plan is imminent.

OP will you update after going to A&E or urgent care? Has she tried 111
as they sometimes refer to urgent care don’t they?

OP you sound like the sister everyone would like to have. Kudos to you for your care and perseverance.

I'm really sorry that your concerns have been confirmed. With her symptoms so evident for some time, you must be worried about the stage your sister is at. I hope it turns out better than feared.

I was about to say ‘be the squeaky wheel’ we’ve sadly had quite a bit of contact with GPS and hospitals over the past four years and have had to fight every step of the way to be seen. I’ve been proven right at every stage so please trust your instincts. I hope your sister receives the treatment she needs and feels a lot better soon x

I'm glad you're finally being hard and your sister is finally receiving treatment, but it's shocking that you have had to fight so hard for this. Sending you both 💐

Similar story to my mum who was fobbed off and told it couldn't be cancer, there are many good doctors about, but there are many shitty ones.

How is she doing now?

Fingers crossed here that you have some answers

Op how is your sis xx

wishing your dsis all the very best. Very sorry to read this but sending positive vibes.

Have been thinking about you and your sister OP. How is she doing?

@Worriedandpowerless

How is your sister OP?
I had similar issues with my mum who had heart failure in the end. The mental torment of not knowing what’s wrong is awful. I hope things are looking more positive x

Hi all - OP here. Unfortunately I lost my account and had to reset using another email (happy to confirm with MNHQ if needed).

The update isn't too positive. She has advanced cancer. Given it has already spread treatment options are limited and she's been in and out of hospital having treatments to get her strong enough for a course of chemo which starts soon.

The best we can hope for is that the chemo gets on top of the cancer for a short period of time where she can then do a "bucket list" .

I'm so angry at the quality of diagnostics provided by the NHS and I really do think they are guilty of negligence - perhaps if they'd taken her seriously and acted on the clinical signs first off, it would have been caught at an earlier stage and been potentially curable or at least could have had more quality time left due to starting chemo sooner. Does anyone know how best to progress this if I want to take the NHS to task on it?

I'm also trying to help her navigate options around her pension, medical retirement from work and so on so if anyone has any useful guidance that would be helpful

** So sorry to read your update and hope treatment can buy her time.

I'm so angry at the quality of diagnostics provided by the NHS and I really do think they are guilty of negligence - perhaps if they'd taken her seriously and acted on the clinical signs first off, it would have been caught at an earlier stage and been potentially curable or at least could have had more quality time left due to starting chemo sooner. Does anyone know how best to progress this if I want to take the NHS to task on it?

Try PALS first of all. They can progress a complaint and you can ask whether protocols were followed as her symptoms presented. You can also request her notes via a DSAR but it may be best to have someone go through them and brief you,

Hi OP - so sorry . What type of cancer diagnosis does she have , will help point in the right direction.
I used to work for Macmillan, give them a call. They have legal advisors in employment law who can advise you. They can also offer financial support and benefits advice as well as other things x

OP - first of all I want to say I’m so sorry to hear this about your sister, I have a sister and I can’t imagine what you’re going through.

Secondly I want to thank you for coming back to update because I have been wondering what happened to her.

Thirdly, here is a link on how to complain. https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

You can either complain directly to the GP practice or to the commissioner of the services.

@Worriedandpowerless2 Just tagging you to ensure you see these messages.

@Mirabai @LIZS @Thea91

Thank you very much for the advice. I'll give macmillan a call and then try to formulate a complaint to the NHS with my sister.

I'm in the exact same situation with my DM. I understand your anger.

Macmillan have been amazing, they have applied for some benefits on her behalf and advised me how to apply for others. It's not about 'the money' but it has given DM peace of mind that my petrol money and bills are paid for whilst I travel daily to the hospice.

So sorry you are also going through this.

I did help her navigate the PIP form a couple of weeks ago and it's a real minefield isn't it. Made even worse by the fact they class her treatment as palliative but not terminal which I think is going to prevent her accessing her pension early and so on.

I can't imagine what would happen to someone who doesn't have family or friends who would be able to do all of this.

We had same problems with my mum's diagnosis, getting answers was a nightmare and a her medical treatment a lot of time was a disgrace.

Thoughts are with you.