Has anyone any experience of changing their consultant and hospital in the NHS to get the treatment you want.

[Mazvol]

Only asking as I am just embarking on trying to do this as my local hospital does not have the trained staff or equipment to do what I need. Any tips or advice would be appreciated.

[iforget]

Not sure I really have enough information about the situation to answer this but here I go anyway

You are within your rights to ask for a second opinion....but I wonder is this treatment you want or treatment they have said you need but do not provide in that hospital?

In my experience, unless doctors consider it medically necessary, realistically trying to transfer care to another team or another hospital is unlikely to get what you want.

Good Luck...do let us know how you get on.

[Mazvol in reply to iforget]

Hi, My thinking is that there is a good chance I will have to have another craniotomy at my local hospital because the cyst they fenestrated has come back.

Craniotomy is is all they have offered if or when things deteriorate, as they do not do the endoscopic micro brain surgery through the nose, which has much higher success and quicker recovery but is only done in a few hospitals in the UK.

I found a NHS hospital and good surgeons about a 100 miles away who do this so would rather travel and be under their care than go through what is offered locally again.

[Sem2011 in reply to Mazvol]

my local neurologist was less than useless. After seeing him over a period of time , he stated 'why was I not back at work and please straighten your left leg, and relax whilst I examine it'. I bloody would if Could! And said do. You really think I want to be like this! He referred me to ULCH in London who specialise in neurology, and finally receive a consultant who knew what was wrong, and not to be patronised was great.

Good luck in your quest. I am sorry your cyst has returned.

[iforget in reply to Mazvol]

Good Luck with this. I hope you will prove to be a suitable candidate and that your local authority will fund this since they do not offer it.

While its not quite the same as brain surgery we had a terrible battle to get our local PCT to pay for me to attend memory aids programme, even though they did not offer such a thing they fought hard against picking up the bill because it was outside our local area. Eventually after a long battle they caved under pressure from Neurologist and two neuropsychs (one from the National Neuro, the other part of the programme) and my very tenacious GP who just would not take no for an answer. It was a life changer... but did not happen easily.

If the NHS was just one big organisation it would be simpler for people to get the treatment needed elsewhere but of course each local area has its own budget and obviously they are reluctant to spend it on services provided in another area... It seems the only time they are willing to pay is when they risk being fined for failure to meet govt targets - which in turn affects their next round of funding.

You should be entitled to receive the best possible care the NHS can offer so if they do say no, keep at 'em

[Mazvol in reply to iforget]

thanks , I was a proper noob concerning the NHS , never been ill so I never really thought about it. I thought the NHS was one big organisation a year ago, so I have come a long way since then. like your moniker iforget.

[Hidden]

Not really quite the same thing, but we changed neurologists without too much trouble. We didn't like the one we saw and told our doctor that we wanted to change. She arranged it for us easily. These days patients have more flexibility about who they are treated by and where, shouldn't be a problem I would hope.

[Mazvol in reply to Hidden]

Thanks for that, it is encouraging, I really do want a different neuro surgeon than the one I have, his only redeeming feature is he did get me back together without killing me off.

[Hidden]

Our first one didn't have ANY redeeming features! His bedside manner was non-existent.

[Elenor3]

Hi, yes do go for what feel right, I'm so sorry you're having to go through this all again. I'm still registered with my neurologist locally but seeing another consultant elsewhere as well as my neurologist said he 'didn't know about' some of the problems I'm experiencing. A fellow patient I met in rehab and kept contact with thinks he's wonderful, so it does rather depend on your particular illness and their particular field of expertise. I would have no hesitation in asking to change to another doctor after what I've been through - it seems you have to manage you're own care as best you can. Go for it.

[Mazvol in reply to Elenor3]

I have been a bit slow on the uptake about managing my own healthcare but after spending time within the system ,bit by bit I am heading in that direction. When your new to healthcare I think you just assume everyone knows what there doing and you will have a coordinated treatment plan and that you do not have to wait long for treatments,tests and aftercare. Not spend ages chasing up late appointments and telling people things you thought they already knew.

I assumed all consultants were the same in skills and trained in the same way and would not be hard to get in touch with.

I realise now that the less you know the less they tell you, and if you sense they are being less than straight with you then your probably right.

Think there is a shortage of consultants who are what you call the complete package, ie not just experienced, skilful and passionate about their work but kind, caring and respectful to the patient.

Like any profession really, a mix of the good , bad and the ugly

I just wish I had trusted my gut instinct more when dealing with certain people and made an effort to understand and learn what I could about my condition and the options available so I could ask better questions and feel more confident in them.

once you get the learning curve out the way it's not to bad, and who knows the effect of paperwork chores , staff shortages and snotty bosses on those working in the NHS.

[Elenor3 in reply to Mazvol]

That's a very fair description of how it is. I'm much the same as you - finding out by trial and error. It's a bit if a mine field. I've nevr had to go to a hospital before so it's all a steep learnig curve. I wish you all the best with your recovery .

[TiredNan]

Hi Mazvol,

I had a craniotomy for the removal of a meningioma many years ago now. I was told very little .... at the time I thought that my job ( was a leading academic lawyer) made them a bit nervous of telling me anything!!!.

In retrospect t....he surgeon, might have saved my life but the neurologist I now see ( for epilepsy) told me that he had looked at my old notes and the surgeon ( now retired ) was "very self congratulatory" about his operating prowess. Nuff said...

I've had to fight for everything and mostly live under the radar as much as possible NHS wise....part form a yearly visit to the neurologist who is at a very well known up North.

I only got to see the neurologist after a young senior house officer suggested it at a different hospital.

Ring Headway if you can and see what your rights are re a referral out of the area.

My advice is to go with your gut instincts... if it doesn't feel right then it possibly isn't.

The NHS is in a mess, everything is targets and money now.

Amongst all this mess there are still some really good folks that you have to search for to get the help.

Always this place to sound off also!

All good wishes, keep talking here, between everyone there's great advice. I've seen more sense here in a few months then has been given to me in the outside world!

Best wishes

TN.

[TiredNan in reply to TiredNan]

Sorry about all the typos... still waiting to go to Specsavers lol!

[Mazvol]

Never mind the typos, thanks for taking the time to reply,

Think I have got my problem sorted now, I searched the internet to find the best surgical team in the NHS and my doctor is referring me to their care, they will do a second opinion first then hopefully take me on as a patient as locally what I want is not available. Means over a 100 miles travel each way but that's the least of my worries when my only choice locally is a craniotomy by the same surgeon who I had last time and I found lacking in experience and care.

[Jules680]

Hiya

My craniotomy was carried out at Hope Hospital (Now Salford Royal NHS Foundation) My surgeon was amazing - Mr Kanna Gnanalingham - and his confidence and experience definitely helped with my recovery. As the tumour I had was on my pituitary gland and brain, he was originally considering endoscopic brain surgery through my nose, unfortunately this was not possible in the end, but they do carry out this surgery there.

I think if you are no satisfied or I would say even confident with a service/procedure you have received, then surely you should be quite within your rights to change consultant and hospital. Have you contacted PALS with your concerns?

Are you having MRI scan's etc to ensure the cyst isn't returning, I was having them every 6 months in the first year and then annually for the next 4, till I was discharged after 5 years.

I remember how worrying the check ups were, as the last thing I wanted was the return of the tumour and to have to undergo another craniotomy, it was hard enough the first time. Totally understand your concerns regarding this.

Take Care

Jules

[Mazvol in reply to Jules680]

Hi Jules, I did have a little moan to PALS about a series of mistakes and the lack of response but at the time was hadn't the energy to blow it any bigger. My GP is very supportive and is happy to transfer me elsewhere for a second opinion so for now I am waiting.

I am meant to be on 2 monthly MRI scans since September and am still waiting so a phone call we will be going out soon.

My cyst is back the same size and position as last time but I was not informed at all by the hospital, I found out by chance when I saw my GP about a fatigue issue and he noticed it in my records on the computer screen.

Only time I actually seen my surgeon since the operation is when after this new information I went to the hospital and walked into his office and caught him and this is 8 months after.

Your right I do not fancy another craniotomy.

[ballet2385 in reply to Mazvol]

Hi, Kev

I know that you and I have talked about the transfer of your care for a month or so now. I'm so glad that your GP is supportive. It is my sincerest hope and prayer that you are a candidate and will have the success that I enjoyed with this surgery. The only failure in life is to fail to try at all. You've triumphed so far, so keep it up!