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Radium 223 postcode lottery!

User
Posted 26 May 2016 at 09:55
Hello, my dad has metastatic prostate cancer which has spread to the bone. He has previously received chemotherapy, had radiotherapy sessions and currently takes enzalutamide. His consultant believes the enzalutamide is becoming less effective as his PSA has began to rise again. He has suggested he would be a good candidate for radium 223 treatment (they want to avoid any further chemo as my dad suffered with blood clots on his last chemo session) He was referred to New Cross hospital in Wolverhampton for this treatment.
So, yesterday, he travelled to New Cross (about 50 miles from where he lives), he was there all day only to be told unfortunately as he lives in Wales, they would have to apply to NHS Wales to fund it. This decision could apparently take two months!! His Consultant currently is in Shrewsbury and he has had no issues with treatment there so far.
Now my dad was born in England and lived in England till he was in his 50's! He now lives about 6 miles over the border in to Wales. He apparently may be able to get the treatment in Cardiff, this is around 2.5hrs away from him, he wouldn't be able to cope with the travelling!
So my question is, has anyone experienced difficulties like this? I think I'm going to question "changing address" as both myself and my brother live in England. My dad is doing relatively well at the moment all things considered but waiting two months for a decision seems senseless to me. What terminal cancer patient has two months just waiting?? Any advice welcomed. Thank you.
User
Posted 27 May 2016 at 12:37

Life is unfair sometimes.


Some people come to this forum for support. 


Unfortunately, whilst looking for support, they may sometimes be the recipient of insensitively worded replies.  Whilst the issue of cross border treatment is a valid one, there are ways of delivering that message in a measured way. Maybe a bit of history will ameliorate the harshness offered by others, giving pause for thought:


Comparisons of Wales with France and Ireland are invalid. Wales was merged with England in 1536. The NHS was brought into being by a Welshman.  Six decades after the formation of our NHS - remember that- the UK NHS, not the UK and Ireland - or France-NHS, a referendum was held  in Wales. 


0.3 % of that vote swung it for the Yes vote - about a quarter of the electorate. The 'We' who voted for it were in the minority.  Such is democracy. Whether it is able to ever deliver  healthcare for Wales  comparable with the previous system is debateable.  The population of Wales has had poorer health for the last three centuries. Wages are low, unemployment high. What has that to do with it , you may ask?


Well, 'your' 'English' NHS hospitals along the borders, principally in mid and North Wales, centres of excellence such as the Robert Jones Agnes Hunt Orthopaedic Hospital in Shropshire, have developed through the input of local Welsh people.  In North Wales, the influence of Welsh expertise in health, in centres of population such as Chester, Birkenhead, Liverpool, and Manchester has been enormous. It can be argued that some of the current hospitals there could not have developed their expertise without the Welsh input and demand from Welsh people. Wales formed the services in these 'English' NHS hospitals. The border has always been porous. If you were ill in the infant NHS, and needed specialist care, you headed to the centres of population for historical reasons...and centres of population sustain centres of specialisation.


With the stroke of a pen 10 years ago, a Government bill to gave control of the budget for Welsh NHS treatment to the politicians in Cardiff on the mandate of a quarter of the electorate. It's not until you are seriously ill, that you realise what a mistake this was. The hospitals referred to above, developed and utilised over the first half century of the UK NHS  by welsh people, did not suddenly levitate and head West at this change. The Welsh NHS has had 10 years therefore to replace those assets. Similarly, of all the Welsh coal, steel, and to the current day, water that was taken from Wales, principally for the benefit of English people, little of the profit from that ended back in Wales. 


By all means, talk about funding, but maybe ponder a little, before the Little Englander asserts...


 

User
Posted 26 May 2016 at 19:15
Wow!! Wasn't expecting such a response from a forum like this! Thank you so much for your supportive comment!! (Not) I'm flabbergasted!!
I asked for anyone to comment who had perhaps been in a similar situation, not for an unnecessary attack!! In future, I'd ask that you kindly keep your harsh opinions to yourself. It's difficult enough to deal with without hearing things like that.
User
Posted 27 May 2016 at 13:34
Walnut,

An excellent post and I agree with your comments.
We were seriously considering retirement to South West Wales a few years ago. Partly because we like the area and also because it was highly probable that one of my daughters would settle in the area following uni in Aberystwyth.
We have many friends in our intended area and some of them have had recent treatment for cancer and other ailments. Through them I am fully aware of the challenges facing NHS Wales re staffing and funding and the politics behind it too. However I always said something would happen to influence our decision either way and that something turned out to be PCa.
So we have decided to stay in the south east of England where I have an excellent hospital just 5 minutes drive from my home. I would not want to change medical teams at this stage of my disease. And I have free prescriptions as a cancer patient too.

John
User
Posted 26 May 2016 at 11:54

A friend of mine just over the border in Wales used her daughters address in England in similar crcumstances. The only problem with it is that you have to change your gp surgery as well..to match your address. This can b a pain if you have a good gp relationship.

Max
"You can only play the hand you're dealt"
User
Posted 26 May 2016 at 17:16
In a completely different scenario, we live near the Severn Bridge in Wales, but I wanted to have my baby in Bristol. It was closer and had better services and repuation.

There was a lot off faffing about and letters exchanged and In the end Wales would not pay for me to have maternity care in Bristol. It took months to get this decision made.

I had to pay to have NHS treatment in England, despite being born there.

The changing GP route and having an address in England would have been the way to do it, had I known. However time was obviously constrained ( as it is with your Dad) and my honesty worked against me.

I have heard that if you live in England you can choose where to be treated, but this may apply to Maternity only, I'm not sure.

It's not an easy scenario and proved very upsetting along the way to be denied the treatment.

I wish you better luck than I had.

Alison

Edited by member 26 May 2016 at 17:18  | Reason: Not specified

User
Posted 26 May 2016 at 19:22
I am unsure how the Radium Treatment actually works and how often it is administered but I am aware that the treatment at Cardiff Velindre and related hospitals is excellent, and although I understand that it is a long way for your Dad to travel, depending upon how often the treatment is needed, could possibly be an option? I can advise upon good value hotel accommodation in the area.

Best wishes

Alison
User
Posted 26 May 2016 at 22:30
Originally Posted by: Online Community Member
I don't want to be inflammatory


But then you were...

Bit harsh I think... If Wales NHS are willing to fund then English tax payers lose nothing and then it really doesn't matter where it is administered.

User
Posted 28 May 2016 at 07:41

Wow, what a conversation that springs from a request for help!

I think I will stay out of this one it seems to have gone steaming in a bitter direction.

Bex, I support your request for help but do not know how to. A bit like a post code lottery really. All the time treatment is offered from wherever, take the best option it is your dad that needs to survive this not the purse strings manager!!

Regards Chris/Woody

Life seems different upside down, take another viewpoint

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User
Posted 26 May 2016 at 11:54

A friend of mine just over the border in Wales used her daughters address in England in similar crcumstances. The only problem with it is that you have to change your gp surgery as well..to match your address. This can b a pain if you have a good gp relationship.

Max
"You can only play the hand you're dealt"
User
Posted 26 May 2016 at 17:16
In a completely different scenario, we live near the Severn Bridge in Wales, but I wanted to have my baby in Bristol. It was closer and had better services and repuation.

There was a lot off faffing about and letters exchanged and In the end Wales would not pay for me to have maternity care in Bristol. It took months to get this decision made.

I had to pay to have NHS treatment in England, despite being born there.

The changing GP route and having an address in England would have been the way to do it, had I known. However time was obviously constrained ( as it is with your Dad) and my honesty worked against me.

I have heard that if you live in England you can choose where to be treated, but this may apply to Maternity only, I'm not sure.

It's not an easy scenario and proved very upsetting along the way to be denied the treatment.

I wish you better luck than I had.

Alison

Edited by member 26 May 2016 at 17:18  | Reason: Not specified

User
Posted 26 May 2016 at 17:36
Thanks both. Think we may have to possibly look down the changing address route then. Not ideal to have to change GP but if it's going to get the treatment he needs then maybe it's the way forward?
User
Posted 26 May 2016 at 19:03

I don't want to be inflammatory but if you lived in Kent you wouldn't complain at being denied treatment in France. Wales and Englsnd are different countries and each has their own NHS systems. NHS Wales and the Welsh assembly have decided how to spend their budgets, a little bit of me resents that you can have the benefits of living in Wales and then come to England and enjoy the treatments that your own country has decided not to offer simply because my country uses my taxes to provide those things. Not everyone in England can get radium 223 - local CCGs decide whether or not to fund it.

Your dad has been very fortunate with his care in Shrewsbury - enzo is very expensive and in England there is still a bit of a postcode lottery for that. I would be upset if my husband couldn't have it but someone's dad who travels from Wales could.

I am sorry if that sounds harsh but perhaps your dad could simply move back to England - I think it is actually illegal to put down an address to gain a pecuniary advantage.

Edited by member 26 May 2016 at 19:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2016 at 19:15
Wow!! Wasn't expecting such a response from a forum like this! Thank you so much for your supportive comment!! (Not) I'm flabbergasted!!
I asked for anyone to comment who had perhaps been in a similar situation, not for an unnecessary attack!! In future, I'd ask that you kindly keep your harsh opinions to yourself. It's difficult enough to deal with without hearing things like that.
User
Posted 26 May 2016 at 19:22
I am unsure how the Radium Treatment actually works and how often it is administered but I am aware that the treatment at Cardiff Velindre and related hospitals is excellent, and although I understand that it is a long way for your Dad to travel, depending upon how often the treatment is needed, could possibly be an option? I can advise upon good value hotel accommodation in the area.

Best wishes

Alison
User
Posted 26 May 2016 at 19:29
Thank you Alison, worth a thought. I'm not sure of the duration of treatment either at the moment. Was just a bit of a shock as he'd not been made aware of any potential issues with regard to funding for treatment. He was expecting to go to New Cross and just get started. I guess that's the fault of the Consultant in Shrewsbury who referred him. Fingers crossed we'll sort something one way or another.x
User
Posted 26 May 2016 at 22:15

From Cancer UK pages....



"You have radium 223 as an injection into a vein. Usually this is through a thin short tube (cannula) put into a vein in your arm each time you have treatment. The injection takes up to a minute.

The injection is normally repeated every 4 weeks. You may have it up to 6 times. You have the treatment as an outpatient and can go home afterwards."


KRO...
User
Posted 26 May 2016 at 22:30
Originally Posted by: Online Community Member
I don't want to be inflammatory


But then you were...

Bit harsh I think... If Wales NHS are willing to fund then English tax payers lose nothing and then it really doesn't matter where it is administered.

User
Posted 26 May 2016 at 22:41

Yes of course if Wales are willing to fund. But if someone pretends to live in England then Wales won't be asked to fund will they?

If this seems harsh, look at the shocking situation in Ireland where treatments we all take for granted are not available at all. They don't have the cancer drugs fund either but men are not allowed to come to England to get treatment that will save their life.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2016 at 23:31

Lyns comments may seem harsh but she was raising a valid observation about the right to treatment based upon the CCG area within which you live.

Could you contact the local MP regarding the length of time it will take NHS Wales to make a decision.

Bri

User
Posted 27 May 2016 at 09:33

It may seem harsh but Lyn is right.


WE in Wales voted for a Welsh Assembly.....If WE want Independence or semi-independence then we have to bare the costs (and the benefits) of that Independence.


I also live in Wales and get all my prescriptions (FREE OF CHARGE) at my local GP....Zoladex, Omeprazole, Amlodipine and countless blood tests.


However since I'm in the Stampede trial I also get Enzalutamide, Abiraterone, Prednisolone and all the other medical monitoring, scans etc... in Shrewsbury (mind you Enzalutamide and Abiraterone are provided to the NHS (Stampede Trial) free of charge from the pharmaceutical companies I believe).


If however I had an issue like Bex1-radium 223 ...I would then simply rent a bedsit in Shrewsbury and make that my primary residency.


 

User
Posted 27 May 2016 at 11:58

Originally Posted by: Online Community Member


If however I had an issue like Bex1-radium 223 ...  I would then simply rent a bedsit in Shrewsbury and make that my primary residency.


 


And incur the wrath of Lyn?

User
Posted 27 May 2016 at 12:37

Life is unfair sometimes.


Some people come to this forum for support. 


Unfortunately, whilst looking for support, they may sometimes be the recipient of insensitively worded replies.  Whilst the issue of cross border treatment is a valid one, there are ways of delivering that message in a measured way. Maybe a bit of history will ameliorate the harshness offered by others, giving pause for thought:


Comparisons of Wales with France and Ireland are invalid. Wales was merged with England in 1536. The NHS was brought into being by a Welshman.  Six decades after the formation of our NHS - remember that- the UK NHS, not the UK and Ireland - or France-NHS, a referendum was held  in Wales. 


0.3 % of that vote swung it for the Yes vote - about a quarter of the electorate. The 'We' who voted for it were in the minority.  Such is democracy. Whether it is able to ever deliver  healthcare for Wales  comparable with the previous system is debateable.  The population of Wales has had poorer health for the last three centuries. Wages are low, unemployment high. What has that to do with it , you may ask?


Well, 'your' 'English' NHS hospitals along the borders, principally in mid and North Wales, centres of excellence such as the Robert Jones Agnes Hunt Orthopaedic Hospital in Shropshire, have developed through the input of local Welsh people.  In North Wales, the influence of Welsh expertise in health, in centres of population such as Chester, Birkenhead, Liverpool, and Manchester has been enormous. It can be argued that some of the current hospitals there could not have developed their expertise without the Welsh input and demand from Welsh people. Wales formed the services in these 'English' NHS hospitals. The border has always been porous. If you were ill in the infant NHS, and needed specialist care, you headed to the centres of population for historical reasons...and centres of population sustain centres of specialisation.


With the stroke of a pen 10 years ago, a Government bill to gave control of the budget for Welsh NHS treatment to the politicians in Cardiff on the mandate of a quarter of the electorate. It's not until you are seriously ill, that you realise what a mistake this was. The hospitals referred to above, developed and utilised over the first half century of the UK NHS  by welsh people, did not suddenly levitate and head West at this change. The Welsh NHS has had 10 years therefore to replace those assets. Similarly, of all the Welsh coal, steel, and to the current day, water that was taken from Wales, principally for the benefit of English people, little of the profit from that ended back in Wales. 


By all means, talk about funding, but maybe ponder a little, before the Little Englander asserts...


 

User
Posted 27 May 2016 at 13:34
Walnut,

An excellent post and I agree with your comments.
We were seriously considering retirement to South West Wales a few years ago. Partly because we like the area and also because it was highly probable that one of my daughters would settle in the area following uni in Aberystwyth.
We have many friends in our intended area and some of them have had recent treatment for cancer and other ailments. Through them I am fully aware of the challenges facing NHS Wales re staffing and funding and the politics behind it too. However I always said something would happen to influence our decision either way and that something turned out to be PCa.
So we have decided to stay in the south east of England where I have an excellent hospital just 5 minutes drive from my home. I would not want to change medical teams at this stage of my disease. And I have free prescriptions as a cancer patient too.

John
User
Posted 27 May 2016 at 14:45

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


If however I had an issue like Bex1-radium 223 ...  I would then simply rent a bedsit in Shrewsbury and make that my primary residency.


 


And incur the wrath of Lyn?



 


Yeah....but don't forget I would be paying council tax twice....and I (like everyone else) pay income tax and national insurance to the UK government...not to the Welsh Government.

User
Posted 27 May 2016 at 19:47

Interesting post by Walnut but Welsh hospitals have also benefited from English doctors working in them too. An English friend of mine, long retired, was one of them but can't see this has any bearing whatsoever on how funds are used. As Walnut stated, the Welsh made their decision and they have to bear the consequences of how their heath budget is spent. What Lyn said is blunt but correct. Where somebody's life is on the line, naturally they are more concerned about this than who bears the cost. Yet we can be contrary. Many would agree it is reasonable to seek treatment in England in a case like this but would be averse to the practice of taking an accommodation address in order to secure a place of a child at school as often happens. But almost all would think it unacceptable for a foreigner to come to the UK expressly to use the NHS and then leave without making any payment. So we can take different views on ways regulations are circumvented.

This is nothing to do with 'Little Englander' but it is reasonable to query why the English NHS should go short to subsidise the Welsh Health Service. Why coal and steel is dragged into the conversation I can't think. Miners and steel workers were paid and not pressed ganged into working and complained when pits and steel works were closed and jobs lost. I also assume Welsh staff were also paid sufficiently well to entice them to work in 'English' hospitals. Chip on shoulder comes to mind!!

Hope effective treatment is obtained.

Barry
User
Posted 28 May 2016 at 07:41

Wow, what a conversation that springs from a request for help!

I think I will stay out of this one it seems to have gone steaming in a bitter direction.

Bex, I support your request for help but do not know how to. A bit like a post code lottery really. All the time treatment is offered from wherever, take the best option it is your dad that needs to survive this not the purse strings manager!!

Regards Chris/Woody

Life seems different upside down, take another viewpoint

 
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