Help Mum has had treatment withdrawn !

Hi, 

Sorry to hear about your Mum. It is a very scary time when treatment ends (my Mum's was stopped back in May due to poor health -ironic!). We too felt a bit at sea and not sure who to contact and we are still a little bit like that - although less so now. 

We have gradually gained support through our local hospice but with this we really have had to grab at everything we can get as they are very busy. After lots of trips to hospital (A&E) the lines of communication all seem to be settling in to place. 

The hospital contacted both the hospice and the GP. Eventually the GP came to the house and suggested visiting every 2 weeks to check on things. The hospice then came and suggested a carer once a day. Mum has now deteriorated and so they are suggesting more care each day. The district nurse is supposed to be visiting 'regularly' but we havent seen her yet. 

I have to say... although it is now seeming like we are well supported it has been a real maze to get here and at no point was it clear who was in charge of the plan! 

I hope you get some support soon... maybe ask at the hospital or your GP as a starting point? 

Sorry to not be much help! 

Kelly 

I’m so sorry to hear that your mother is so ill ( and so young too). 

It must be awful to feel so unsupported, and I would urge you to get in touch with your local hospice. As I understand things, hospices are independent of the NHS, usually run on charitable status. Hopefully the GP will be able to get the district nurses involved and sort out pain management. 

I wish you good luck and strength x

Hi there, last year my partner had an operation for Pancreatic cancer but refused follow up chemo. After recovering brilliantly initially he is now struggling to eat and fading away before my eyes. With oncologist reviews only every 3 months I felt we only had the support of his GP who has given many types of food supplements  and advice. Unfortunately I had to keep phoning her to say that he was struggling to take the supplements and he is becoming weaker. So, sorry for the long winded approach but the GP then referred him to palliative care team who visited after only a few days, they have been supportive and willing to check in and be called on at any time. He is going to have some steroids and antisickmess tabs to help improve appetite. They will gradually find out how he's feeling, what he understands is happening and what his wishes are. I no longer feel  left high and dry, I know that they are aware of his declining health and they will support us. No longer a struggle trying to contact Gp as that is my only point of assistance.. All procedures such as scans seem to take forever when you feel time is running out. I hope that you find this helpful, I suppose the message is keep asking, Mcmillan by phone are hugely helpful. Please let us know how you get on, you may even want to join the pancreatic cancer group for more support. Much love, pam x

Thanks for sharing your story!  It gives me hope that we can somehow get the help we need. Many thanks.

Thankyou, I’m going to get in touch with the local Hospice and take it from there. Hopefully after the bank holiday we can get the GP on board. X

Thanks for sharing your story Pam, sounds like your being very brave! 

I will keep you all posted on now we get on moving forward! 

Hi I'm very sorry to read your story about your mum and to hear about the lack of care mum has received  when a patient, like your mum, is discharged from hospital her care reverts to the GP and they should take on the responsibility of her continued care and including the services of the district nurses it is all too easy to say we are over stretched and under resourced but that is no answer for refusing your mother care, when you say the GP will be speaking to you on Tuesday is that a house call or a telephone call either way you should be taking everything up with him and asking why it's taken so long to visit your mum and mention the comments made by the district nurse. If he is evasive calmly ask him for the name of the lead GP at the surgery as you need to speak to him about your mother's care (or lack of it) with a view to putting your concerns in writing (note I didn't say make a complaint but putting your concerns in writing) to get a reaction from him.

Unfortunately much as Macmillans would like to have a nurse in every area for every patient sometimes it's not possible but that doesn't mean mum can't have care ask the GP about Marie Curie nurses (they are not in  opposition to Macmillans but on occasions work very closely with each other) and see if they have nurses in mums area.

You might want to have a look at this Marie Curie nurses before you speak to him to give you an idea about the care they offer.

You should not be driving your mum to hospital in her state of health again the GP can and should be arranging patient transport to take her to appointments.

Only you GP can manage mums pain with medication and if he wont call and examine her you will have to take drastic action and phone NHS 111 and ask for the duty doctor to call he may suggest a visit to A&E but it's a small price to pay for getting mum some help.

I'm afraid as far as I know getting a hospice placement could be yet another question for the GP to address and another question for Tuesday.

Everything that happens to your mum revolves around the GP and sooner or later he will have to become involved and the time it should start is Tuesday.

If you need further advice or want to speak to someone our very friendly team in the telephone support are available for you to speak to any day between 8 am and 8 pm even tomorrow and Monday and they will listen to you and give you advice, they can be contacted on 0808 808 0000, daily they help many people and tomorrow could be the day that they help you when you give them a ring, not only do they give advice they are very good listeners and will give you their full attention.

Please do keep in touch with us and remember that you need support just as much as your mum and we are here at anytime you want to speak, have a rant, have a rave and when you need to let off steam this is a very safe place to come to where you will be amongst friends who know what you are going through because they've all been in your shoes at one time.

Ian

Hi Ian, 

Thank you so much for your very helpful reply, this enabled me to be ready and organised with the questions for todays phone call from the GP.

GP was very accommodating and listened to all our concerns and as a result has actioned a palliative care referral with the local Hospice. fingers crossed.

she will be calling to do a home visit later this week, all medication is organised and has been processed and collected this afternoon.

We took her straight in after the call for a blood test as we think she may be in need of a blood transfusion again results tomorrow, all in all we feel a lot better today its been a long week without any medical guidance and we feel now we are headed in the right direction.

we don't have a marie curie in the area either just to answer your question, however we have been talking to our local vicar who has been incredibly kind and caring.

I will keep updating.

Kind Regards

Such good news. I’m so pleased and relieved for you x