Just need to let off steam....

Hi 

I'm very sorry to read about your mum and the troubles you are having especially with specialist nurses it's a story that is been reported on so frequently now.

You are asking when the Macmillan nurses give support, has this been arranged by anyone so far.

Its sounds as if you need help at night caring for your mum, the person that has overall responsibility for the care of your mum once she is discharged from the hospital is the GP if not your mums it can be your own one if your mum lives in a different area to you.

The GP can make a referral to the Macmillan nurses for support but this can also be arranged by the hospital or the district nurse.

In the event that Macmillans do not have any nurses in your area can I suggest that you have a look at this Marie Curie patient services as a possible alternative.

You should also speak to the GP with regard to getting some home support for you and your mum, you cannot go on with not getting any sleep, I would suggest that you phone your GP surgery this morning and request a home visit for your mum.

You should also consider contacting your local County council Adult Social Care Team and ask for a needs assessment for your mum to identify what can be done to help both you and mum.

Please click on this to open it up Needs Assessment.

Please never apologies for having a bit of a rant on here, we all have the need to do it at sometime as this is very safe place to come to rant and rave or to let off steam we all understand where you are coming from and never judge anyone.

We are also available for a chat at anytime no matter which group you post in be it this one our Carers only forum or Supporting someone with incurable cancer forum you will be amongst friends who are all very supportive of each other.

Please keep us informed on how you and mum are getting on and if you need to have a scream do it I'm sure your mum will understand she probably feels the same.

If we can be of any further help please give us a shout out and we will do what we can I help you with support and advice.

Ian

Hi Ian

Thank you so much for your reply.  I have called Mom's GP and she is coming out after surgery (mom has now a leg that is aching and red and I'm worried about cellulitis....)  will have a good chat with her (if its the Dr I'm expecting.

We've not had anyone or anything other than two very very kind District Nursers that were in the area and had been told how upset I was and they called unofficially to check on Mom.  They said her wound is healing well and she didn't need any input from DN.  I had called them originally and the top told  me to.  the Nurses said it has to come from the GP I had to call the GP back then to get the receptionist to understand this was something different to me asking for incontinence pads (which I have been told will take 3 months for the referral to be processed).  Just gave up so no idea what is happening from that side of things.  We even had to buy a bed because the hospital wouldn't supply one - we just live over the border and come under another health authority.  literally a 15 minute walk from moms house but the can't get the two to play ball regardless that we all go to the Queen Elizabeth Hospital in Birmingham if we need hospital treatment as this is the nearest!  Crazy systems.

Anyway, will look at the Needs Assessment link now and report back as the day unfolds.   Lots of tea and coffee I think

Again - thanks for the ear.

Hi 

Thanks for coming back and I'm pleased that a GP is coming to see your mum hopefully it will be the one you want.

I would ask him about NHS continence clinics as I believe they can issue incontinence supplies.

Ian

Hi . Just to add to the  excellent advice above, Can I recommend you also call the free helpline listed in Ian's reply. Your mum may be entitled to extra financial help and they will talk you through it as well as offering further practical advice. You will find them very friendly and helpful. The number again is 0808 808 0000. Best wishes.

Thank you so much.  Will do x

Dear Annmj, I don't have much to add to all the kind and usefull things that have already been put, except to say for myself and I'm sure dozens of others on here that read your posts, we all send you and your Mom and your husband and family all our good wishes for everything to be sorted into a situation that works well, without using you up and wearing you down any more than already.

We too have experienced the cross-border discrimination over equipment and maybe when this election's done I'll remember to ask the new MP to work on sorting this...

The only other specific thing as soon as you have got the immediate needs under control, do get in touch with your local Carers' Association. What's on offer varies by area, but all are supportive and many have groups you could go to, and usually a lot of useful local knowledge. As well as money for your Mom there may be benefits for you as carer. One that is never advertised is Carers' Credit which pays your National Insurance contributions so you don't lose out on your pension, if you yourself are still of working age but don't work.

And I'll echo, let off steam all you like, healthier than bottling it up in my opinion and definitely this is a good place for it.

thinking of you,

Denby

Hi Annmj, so sorry to hear that you are having to face such sad news. I really hope the system clicks into place for you after your GP's visit. This time is precious, so I hope professionals coordinate support so you can focus on saying a loving goodbye to your mum. I haven't died of my bladder cancer (yet ) but I think if it progresses it will be my body that collapses not my mind. So what your mother thinks and wants is the most important thing. I have lost someone I loved very dearly to cancer, and the last months of her life were an exhausting, intense but in some ways a beautiful time. I guess that all of us, treatable or not, do best if we cherish every day. Sending love x

Hi Everyone - thank you for your advice and support.  

Well what can I say - the GP came out and started her speel with  "You are across the border you should register your mom with your own gp"  I politely pointed out that her surgery was only minutes away and they know moms history etc.... All I gained from the visit that Mom was doing well considering, some oxybutene tablets and a big tub of horrible cream to rub on her legs!  She said I was doing the right thing contacting all the various people.

Mom has her outpatient appointment for her collarbone on Thursday so I will ask them to check out her leg etc too and take it from there.

Can anyone tell me at what stage Macmillan Nurses come in and offer support - is this just when it is dire and near the end or ?  I have no idea.

Entitlement to finances I am on top of this and have claimed all I think she is entitled too.

Had a better nights sleep which helps - managed to get to 5 am today - Yeah

BTW Still had no reply to my email to specialist nurse at QE that we are supposed to have direct line to.  Its a joke.  Will bombard her daily with emails till she's fed up with me.

Thank you all for the ear again ! xx

Hi Annmj

I'm so sorry to hear about your dear Mom, hopefully you'll both get the support you need very soon.

Is that the QE Birmingham by any chance?  

Take care x

Hi Blanket

Yes it is the QE Birmingham - have you had experience with them too...  x