Hello all, I have joined the group as my Dad has lymphoma and I've been helping him through the first few months after diagnosis. We are not happy with the level of care he has received at his current hospital and want to transfer. It would be great to get hear about some other people's experience of care before we decide. St Albans area.
Thanks all!
Hi BirdieP and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have HL but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a and although my blood cancer ‘type’ is different but I do know this journey rather well.
I am sorry to hear that you feel the level of care your dad has been receiving has not be good enough and you are looking for a transfer.
I was well looked after during my initial 14 years treatment in Inverness, although nothing was perfect so had the normal lack of communication, canceled appointments, not seeing the same consultant...... but this is the NHS and this was not during Covid times but putting my point elbows into the system and setting clear expectations went a long way to fix all the issues that came along.
But I had to be transferred down to Glasgow for my two Stem Cell Transplants this also included my case being sent to other cancer centres for review before my next treatment started..... this was all very well arranged by my Inverness and Glasgow teams. So I have no first hand experience of actually looking to move care.
Lets look for anyone in the group who has first hand experience in doing this.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via web chat. This service provides cancer information, emotional support, benefits and financial guidance or just a listening ear.
You could post your question in our Ask an Expert section about the practicalities of doing this but do allow for a few days for reply.
Always around to help more or just to chat.
I think the initial question is would he 'defiantly' get better care after going through transferring to another hospital?
As I said I had to move been between hospitals but had no real problems. One important aspect of transferring between Hospitals especial between Health Boards is getting a clear transfer of information and care.
Up in Scotland we have a 'joined up system' so I could have a blood test in Inverness at 9.00am and an hour later I could be on a video call with my team in Glasgow and they could see my blood results as well as all my medical records.
From what I have picked up talking with others in the South (if that is where you are at) this can be a challenge at times resulting in a break in care.
Are the issues at his existing hospital insurmountable? as in having open and clear conversations. As I said I have had bumps in the road but the problems were always improved through open dialogue.
To widen your search for answers you could join our Family and friends and Carers only groups where you will connect with others supporting family and friends across all cancer types and put up a post asking your question - try and be specific about where you want to move from and the destination hospital ((hugs))
