Help to find the right support needed.

[LucyF]

Hi there

My Mum was diagnosed with PC just over a month ago. It was a big shock for our family. The knowledge levels locally on this issue have been shocking (as mirrored by lots of others). My Mum also suffers from acute anxiety as well as IBS and it has been so hard trying to work out what pains/symptoms are associated with which health problem.

PCUK have been the only organisation who seem to have the knowledge and ability to join up the dots!! We are incredibly grateful to the team of nurses here.

She has spent some time in the local hospice sorting out drugs and even here the consultant did not seem to know about the use of enzymes. One junior doctor even suggesting coming off them!!

Mum really wants to talk and get reassurance from someone who knows about PC and has some expertise face to face and on a regular basis. WE don't know what the solution is to this challenge (is indeed there is a solution!) and are conscious that this anxiety is also part of a wider mental health issue. She is based in Bedford and could pay for this support.

Our thoughts so far have been:

- Trying to see a specialist but we realise that this would not be regular support. Does anyone know anyone good?

- Trying to find a local nurse who has some experience of PC who could come in on possibly a daily basis to provide reassurance.

Any thoughts gratefully received!!

[Justamo]

Hello Lucy. So sorry to hear about your mum.

You say that mum has attended your local hospice. Perhaps one of the staff there can give you details of face to face support or groups which may help ? This forum is open to the public and the mods are very careful about privacy and safety so location and identification mentions are quite often edited out.

I've checked out Maggie's Centres and the nearest one to you is in Cambridge. Not much use I'm afraid. They are planning another one in Northampton.

What about MacMillan ? Can they offer help ? Can your GP suggest anything.

Are you on Facebook ? I believe there are active groups on there about PC. You'll get the best possible advice on specific problems from the our wonderful nurses on the support line.

Disgraceful that the doctor want to stop enzymes. They are a good supplement, not a drug.

Best wishes

Mo

PS - if you Google Maggie's Centre, and go to 'find a centre' there is a link to their online centre which seems to offer quite a lot of help.

[Guest]

Hi Lucy,

So sorry that you have found yourself on this forum but hope that you will get the support you need. My husband died at home last August and our thread "Our journey without chemo" is in the carers subsection. No two cases are the same with this disease but you may find some useful tips.

The hospice and the GP will be able to point you at the help you need and ultimately the GP is responsible for your mothers health and wellbeing so if he/she is not giving your Mum the support she needs then perhaps you should ask for a meeting with her/him to agree a plan and the correct support. You are also allowed to ask for a second opinion or to change GP's if you are not happy. The hospice and the GP will be aware of all the local resources both state and private. You might also contact the local carers support team who also have lots of experience. It may be that your mother needs the local community mental health nurse or community nurses to support her. The hospice may also have an outreach team.

I don't know if your mother has any religious faith but priests, nuns and other lay volunteers may also be able to help with reassurance about the future. Sadly there is no magic bullet and in due course end of life issues and care will have to be faced. I am making some assumptions here from the fact that it was the hospice team who have been caring for Mum and that you say she has other complex health needs.

If you have not already done so you might find it useful to attend a hospice run course on caring which covers everything from how to lift someone to nutrition, pain management, and financial matters. It is important that you get the GP to issue a DS1500 form if you have not already got it, so that you can call Macmillan finance and claim your Mums attendance allowance. Macmillan will fill in the paperwork over the phone and chase it for you, it's what they do. You will need this to help with care such as night sitters and so on and it is your Mums right. Sorry if you already know but many don't so I always mention it.

The GP, the Hospice specialist nurse or the community nurses (District Nurse) will also be able to arrange things like hospital beds and any other equipment you need, but the starting point is the GP and the treatment plan.

I hope all this is of some help and I wish you a peaceful night.

Marmalade x

[Elaine123]

Hi Lucy and welcome , you will find that the support you receive on here is a lifesaver .....the forum members and the nurses are all fantastic and they all have either been through this or are going through it and can give you invaluable advice. Hope today is a bit better for your Mum

Elaine

X

[LucyF]

Thanks for all the support and advice Elaine, Marmalade and Justamo. Much appreciated. x

[Veebee]

Hello Lucy I'm sorry that your Mum's facing this cancer on top of other health problems. I'm a newbie on here myself so can only reiterate what Elaine has said. I'm amazed that a doctor suggested stopping the enzymes. They're essential and in our case, have been invaluable for the digestion problems my husband had before he began to take them. Has your Mum been allocated a Macmillan nurse? Ours has been wonderful at adjusting medication and giving advice. I hope you find the help that you're looking for.

[LucyF]

HI Veebee - our experience of the Macmillan nurses has not been very positive I'm afraid. We have had to chase for everything. It's very disappointing as we had only heard good things before this all happened.

[Proud Wife]

I'm afraid I was in the same boat Lucy. Our Macmillan nurses promised the earth and delivered nothing.

Have you got any further? Has your mum got a good, caring understanding GP? We have and our dr was amazing during my husband's battle. She put us in contact with all the necessary people (NHS) and they delivered a far better service I have to say than more of the staff (but certainly not all) on the oncology ward, which was a private one thanks to private healthcare insurance.

At a time like this, your mum needs all the support she can get. I wish I could give you advice xx

[Elaine123]

Hi Lucy I hope your Mum is having a few good days.....it can be so difficult when you have not got a good support team that you can call on for advice or help for your Mum....if you find yourself at your wits end as I think we do quite a lot trying to manage this bloody disease please come on here or phone the nurses as there is always someone who will have been through what you are worried about or can put you in touch with some who can help you. After Pete was diagnosed I felt so alone as other people have no idea of the nature of PC but here has been a lifesaver for me. I feel for you both not having the support you need. Hope a treatment plan can be implemented soon. Take care and keep battling away to get your Mum the best care you can.

Elaine

X

[LucyF]

Thanks Proud Wife and Elaine x Luckily I am not the only person supporting my Mum, we are a big family and I have 3 siblings as well as my Dad. My sister is doing most of the day to day caring work but we are a support for each other. Mum is in a good place at the moment as well. It's just the professional side that seems to be letting us down. We are thinking of changing the GP but seem to be stuck with a rather useless service from Macmillan. I was thinking of letting Macmillan know centrally as I think that this is an NHS management issue. We have sorted an OT to come out and assess Mum's needs but this was off my sisters own back!

[Guest]

Hi Lucy,

So glad your Mum is feeling better about things.

it's the GP,s responsibility to ensure your Mum gets proper palliative care so keep going back and making the GP aware. This care is paid for by the local care commissioning group including your GP! If it's not working your GP must deal with the issues.

It's appalling that you have to do this but unless you push your Mum, and others, will continue to receive substandard care.

Good luck,

Marmalade.

[Dandygal76]

Hi Lucy, I cannot get from your thread if your mum is taking Chemo or not. If she is and you are getting the vibes that Bedford is not the place for her then I would say that MK Hospital and their oncology department were fantastic (I have issues with the ward separately regarding dads admission). I had a bad experience with the NHS at the start of dad's diagnoses and when dad transferred to MK Hospital (after his trial) I was not an easy carer to manage because I know the systems and how to work it (politely). I could not fault the response on the cancer department and their manager was absolutely heads above any other professional I had encountered on dads journey. The oncologist was very knowledgeable and really up to speed on latest developments and the links to Oxford (as a pancreatic cancer centre) was very close and worked well. I know PCUK may not be happy I posted a recommendation but I feel, as long as we are not disparaging to named individuals and institutions, that we should be able to point people in the positive directions and towards good practice. It is a minefield out there and this is not a profit organisation. If you are going for a 2nd opinion, I would really recommend MK Hospital as it is still local to you. I hope that helps. x