Husband referred for PET scan in 8 weeks! What's a normal waiting time?

Hello Wendy (Wendy) 

A warm welcome to the group, although I am so sorry to find you joining us. Sadly the waits for a PSMA-PET scan can vary up and down the country - my wait was less than a week. I have read that there is a shortage of the radioactive tracer although the cost of £3000 a go isn't cheap. The other issue is living in Wales the Welsh authorities appear reluctant to send people to England for treatment (A National Health Service?).

You could ask your hospital PALS service (Patient Advisory and Liaison Service) if they are able to speed up the process. If you remind them of the Cancer Pathway timeline and also the wait is causing anxiety.

It would help us to help you if you could add your husbands journey to his profile. to do this on your home page click on the chair - top right and then profile, and then edit. Once you have written something don't forget to save it. You can read Community members profiles by clicking on their user name or avatar.

Best wishes - Brian.

Hello Wendy ,

I am only just down the road from you but over the border in England and have been treated at the Royal Shrewsbury Hospital. My PET scan was in July 2023 with only about a couple of weeks delay. However there was then a wait of almost a month to receive the results of that scan.

My brother is now waiting for an appointment for a PET scan at the same hospital the time scale of which I will report when we know, his scan was only requested by the consultant on Tuesday (13th Jan).

The point of my reply is that a PET scan may be available to your husband at the RSH if you press the Wrecsam hospital, after all the RSH provides hospital services for much of the eastern part of mid Wales so why not for you.

Thank you for your feedback back. It is a sorry state when we have to try and twist the NHS arm to be listened to. We have all payed into the NHS so why can they not find a scanner nearer to the patient? It all adds to the stress of the situation! Is it a Wales thing.? The big divide? I want to fight but feel like no one listens. Again thank you for your message. 
Kind regards

Wendy

Hello Wendy (Wendy) 

Sadly that's the NHS for you. I am lucky as I live in North Manchester so have The Christie the 4th best cancer hospital in the world, dealing with me - cancer treatment is almost a postcode lottery!

We have the NHS App in England, I can see all my GP test results on it - I understand you don't have it in Wales but have free prescriptions and free hospital parking.

Earlier in my journey whilst at different hospitals under urology I had to push for everything, appointments and results etc.

On a cancer journey you do need to advocate for yourself - I would be contacting the hospital and confirming your husband is able to accept any short notice cancellations - but at the same time i would be pushing PALS to bring forward his appointment.

In 2019 Wales introduced the "Suspected Cancer Pathway" and everyone should not wait more than 62 days from when cancer is first suspected to having a confirmed diagnosis AND starting treatment.

Wendy said:

I want to fight but feel like no one listens.

Yes - you do need to fight for his treatment.

I hope the above helps.

Best wishes - Brian.

Thank you Brian. When they decide to pick up the phone I will try and push. 
kind regards

wendy

So sorry to hear of this delay. My husband was diagnosed in October. The pet scan was one week later on a Wednesday. He got a phone call Thursday evening with an appointment with an oncologist Friday morning early. The oncologist had the pet scan results so we were very lucky as it was all a matter of days. It does seem to be the luck of the draw depending on where you live. We are in Brighton and the oncology unit is eight minutes walk away. Having to wait so long is incredibly frustrating. I hope it comes through soon for you. Good luck x

Thank you. All the support on this sight is very helpful and makes you feel like you are not alone. 
kind regards

Wendy

Hi Wendy ,

I am afraid we are in a situation that means we all have to be very firm with our communications but at the same time being ultimately polite. I know that this can be very difficult in a stressful situation and we are not all able to manage such a situation, I hope you can.

I didn't have any problems getting scans etc. done but I did have difficulty obtaining a date for the start of my radiotherapy. I resolved that by visiting the hospital and meeting a member of the appointments team face to face, after that I had an email quoting the date within two days of that meeting.

Regarding your husband's scan, it may be possible to press Wrecsam to get him into Chester as depending where you live in relation to the Wrecsam hospital that must be nearer than Shrewsbury.

A word with the Wrecsam PALS team may bring positive results, you will find contact details for them in Wales by Googling "PALS Wecsam".

Rod

I remember reading a newspaper article last year relating to comparisons between the Welsh & English NHS services.  Each Government sets their own priorities & allocates funding accordingly to their own NHS, one example being free prescriptions in Wales but not in England.  I can't recall what the funding level per head of population was but think it was on a par.  This can mean that some types of treatment timescales are better in one country compared to the other.

The article then went on to discuss that with fewer large hospitals in North Wales, patients could sometimes be referred to hospitals in England, however the Welsh NHS then had to pay to cover the cost and a budgeted amount is set aside to cover.  At that point in the 25/26 tax year as this budget had already been exceeded the decision was made to severely restrict any referrals to English hospitals, & instead the expectation was that people living in North Wales would be referred to hospitals in South Wales.

As it's the Welsh Government that sets their own priorities it may well be worth contacting your own MP about to see if they can help. Whether this situation will change as we move into a new tax year is up in the air.

Thank you so much Rod. I will have to get my husband to get his head out of the sand and start the polite fight! I think he is ignoring everything which I am finding hard to deal with. I will try the PALS team to see if we can get anywhere.

kind regard

Wendy