Feeling very let down

Hi Almondnut

I'm really sorry to hear how let down you feel with the recent care of your mum. I haven't been in the same position as you but I thought I'd suggest that you get in touch with the Patient Advice and Liaison Service (PALS) at the hospital where your mum's care is based. They can help with problems you're having with the NHS and also tell you how to make a complaint if you and your mum want to do this.

Are there other GPs at you mum's practice? If there are it might be a good idea for her to change her GP as it doesn't sound as if you have any confidence with her present one.

I can't begin to imagine how difficult this must be for you living abroad and trying to care for both your husband and you mum. You might like to join the carers group where you can discuss your worries and get support from others who will understand what you're going through.

To join just click on the link I've created and choose 'join this group' on the page that opens.

Sending a supportive ((Hug))

Thank you for your reply and the tips. I had not heard of PALS so will look into it. I dont want to complain I just want to get them some support when they need it. Much appreciated. 

Hi Almondnut this is absolutely shocking, no other word for it!!

Do complain, why on earth should your poor mum be treated like this ?

Latchbrook  is right, let the local PALS know about this inadequate provision. Don’t put up with this nonsense service.

It would be a good idea for some support to be put in place if possible.

Do you have family in this country who can support your parents, so all the responsibility doesn’t fall on your shoulders ? 

Try to change GP , a decent one would advise about local Social Services Support for your elderly parents.

You could contact Macmillan and ask what support is in your locality/ contact Citizen’s Advice Bureaus ( CAB) if they still exist ( must not get political here).

District Nurses? 

Are there any local Hospices eg “Martletts”

which could offer support? 

You could send emails to various people eg Oncologist/s via their secretary ( I know the direct telephone number and email address for mine and use it). You could contact the hospital and find out? Ask to be copied into medical reports ( I do).

Also if you send an email, I always find it is a good policy to copy in a few people, that way you can be sure of a response. For starters your mother’s Secondary Breast Care Nurse? 

Another useful www is 

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/secondary-metastatic-breast-cancer/living-secondary-breast-cancer

https://www.breastcancercare.org.uk/information-support/support-you/our-nurses   Catherine Priestley might be a useful person to contact as she’s a Secondary Breast Care Nurse with an interest in developing support for people living with Secondary Breast Cancer. 

Love Judith xxx

  Hi Almondnut. You mentioned that your mum’s Oncologist is in Doncaster, ask to see another Oncologist for a second opinion.

Maybe ask at the Oncology Reception Desk if they have a leaflet or pamphlet of the Oncology Team and staff, then it is possible to find out a bit more about their specialisms or see if the local area health authority has a section on the Hospital and its Oncology Department. 

There is “no rule “whereby you see the same one each time ( unless you want to and they are great/ on the ball/ professional) 

Try emails in addition to phone calls? If I don’t get a response to an email, then I resend once or twice a week until I get a reply. I also copy in 2-3 health professionals so everyone is kept up to date with what’s happening!

Good luck 

Judith  xxx

Thank you Judith. Very useful information. I will be on it first thing tomorrow after the bank holiday.

Last week the Macmillan nurse never called back, we rang the breast care nurse to be told it was half term all on holiday and we rang Weston Park in Sheffield to get an answer phone telling us to ring Doncaster! In the end we called an ambulance. I hate doing that unless absolutely necessary. Interestingly the paramedic could not get hold of anyone at Doncaster, Sheffield, the hospice, the Macmillan nurse so she said sod it and took a punt on which anti sickness drug to give my mum. The paramedics were brilliant. 

I really appreciate all the replies and support on this group you sometimes feel so alone and helpless.

Thank you. 

Well sadly I was right. Mum finally got her scheduled four monthly MRI and has more brain tumours. Four months the oncologist ignored the symptoms and refused to bring the MRI forward. Mum has gone blind, can't string a sentance together, losing balance, pain and facial numbness spreading and tremors. Despite all that they insisted it must be radiotherapy side effects now four months wasted while they did nothing and refused to listen they finally offer radiotherapy but she is so poorly I dont think she will cope and her quality of life is gone her sight will not come back. I am so angry. 

Hi Almondnut

I'm sorry that you've been proved right and I can understand how angry you must feel right now. 

I don't know if you got in touch with PALS at your mum's hospital after my last message to you but this is still something you could do, this time though to put in a complaint.

Sending a supportive ((hug)) to both you and your mum

I did get in touch with PALS and they were very nice but they couldnt talk to me without mums consent and she is too poorly to talk to them, also they fear rocking the boat with the consultants if they complain so my hands are tied. Thank you for your kind words.

Mum went rapidly down hill on Sunday and was admitted to the hospice on Tuesday. I am sat with her but she is unable to communicate, very agitated, delirious. Its very hard to watch. If only the oncologist had listened four months ago she might then have been fit to have radiotherapy to manage the symptoms and maybe buy some extra months.  Now they are fitting a syringe driver so its too late. 

Hi Almondnut 

I am so sorry that your mum and you are going through this. 

I am sending you a hug Look after yourself.

Love Judith xxx