Hi Rileyroo 

I hope you're well.

I have had no luck as you said yourself with Pals and it has been possible  to get an appointment  with them and nothing has moved forward at all with my other procedure in relation  to the ovarian  issues.

I have been left in an increasing state of anxiety  and my gps answer to it all  is just counselling  and to increase my diazepam.

I'm really low with it all.

Hi Jolamine 

Thanks so much for your kind words and full empathy  of my predicament.

Nothing further has happened  since my last message and I feel that nobody is doing anything  to help me anymore and dont know which way to turn.

I have had no response  from any of my team about my ovarian  surgery or my bilateral masectomy.

I'm assuming  nothing more will be done about the breast surgery until I'm reviewed in December, and I am at the bottom of a long waiting  list.

My hospital is falling apart  and needs £20 million repairs done to be up to standard.

Just recently  the childrens wards have all  been closed due to subsidence issues, and it's real chaos.

If genetics referred me to another  hospital  for a second opinion  then I would be like  you with another 3 hours to add on my journey!

The problem is that I would incur child care charges  as I have nobody that can pick my children  up from school and look after  them for me and it's a worry  having to travel so far and be back in time to collect them.

It was very  much like this while I was going through treatment  and was very stressful.

I'm finding  it hard day to day living with the fear regarding  Brca 1 and all my gp can offer is counselling  and increased medication.

This just gets better, not. 

Any suggestions, [@davek]‍ ? Rock and a hard place doesn't even begin to cover this?
 

Thanks I'm just finding it hard everyday living with the fear.

Hi Mumof3angels,

You are naturally worrying. I can appreciate the logistic difficulties with the other hospital and fitting appointments in to work in tandem with school hours. Is there another cancer consultant in your current hospital that you could see for a second opinion? Everyone is entitled to a second opinion and, that includes you.!

Try not to let the condition of the hospital upset you. You often find good surgeons in these places for logistical reasons too. Not all surgeons are as uncaring as your current one. The other thing that you can do is to seek a one off consultation with a consultant at the other hospital. Do you have a friend or relative who could look after your children for a one off visit? Unfortunately, if you do get a different opinion, you would probably want to change to the surgeon who gives you this opinion, so it would obviously be easier for you to see someone in your current hospital. Your current surgeon would be unlikely to change his mind about preventative surgery, unless the surgeon was very persuasive.

You really are between a rock and a hard place at the moment and I feel for you. Why not have another word with your GP and see what advice you get. I am sure that he could arrangefor you to have a second opinion, although a referral from your current surgeon, should get you seen sooner.

I see that Rileyroo has already mentioned Davek. He is very knowledgable on hospital potocol and may be able to come up with some better suggestions.

Kind regards,

Jolamine xx

Like Rileyroo, I have little faith in PALS as they are not independent. They usually report to a Director who, in turn, reports to the Chief Exec.

Writing directly to the Chief Exec is a better idea as this avoids senior management being able to claim they were unaware of the issue. In England, Hospital Trusts are paid by Care Commissioning Groups (CCGs), inspected by CQC and (although not many people realise this) are overseen by your local authority. In the past I’ve threatened to complain to each of these when I didn’t feel my complaint was being taken seriously. I’ve also written to my local MP and councillor (copied to the Trust Chief Exec) asking for questions to be raised in Parliament and at the council’s NHS Overview and Scrutiny Board (Healthwatch has a similar function). 

The last thing they need is bad publicity, but I’d keep that as a last resort if all else fails. 

I hope you get this resolved.

Best wishes

Dave