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Lack of support for private patients

15 REPLIES 15

Re: Lack of support for private patients

Morning girls

 

I do think it looks like no system is perfect.  I didn't know about this site when going through treatment, i didn't hear about it until i went to a BCC Moving Forward Course. So all my information came from NHS System, BC Nurses etc (I have to say two of them (team of six) i wouldn't give the time of day......)   I did do two residential courses at Penny Brohn and met a few people who had private treatment.  One Lady, South London, had a small tumour in one breast (she had no other information, didn't even know what other ladies were talking about TNBC grade stage etc).  Her private consultant did bi lateral mastectomy with immediate diep reconstruction.  No radiotherapy, no chemo..... she didn't even know whether any of these were needed, she described a two week stay in private hospital in London, much like a boutique hotel with tummy tuck and pert new breasts, no follow up at all no mention of any testing, no family history taken, she is 30 ......   

 

I do think you've got to take the best bits from any service and leave the rest alone.  I stopped complaining a long time ago,  the only person this stresses is you.  

 

Where i live we don't have Haven or Maggies, we do have a small local Cancer Charity where i was able to access Complementary Therapies, i did, in the NHS system, have to ask and ask again for certain things like referral to Physiotherapy, couldn't get Mindfulness (only available in Secondary Care Mental Services which i didn't meet the criteria for 'Thank goodness'). 

 

I do think, in reality, when going through treatment i was very fragile and sensitive so some of the things that bothered me were only little things.  I am 3.1/2 years on from diagnosis, just waiting for my 3 year Mammogram results on left breast (non treatment side) and need to have reconstruction to right side taken down and done again in a different way due to Capsular Contraction.

 

I am only 53 years with a lot of living to do, since my diagnosis my Son has been married, a spectacular day and in November last year my Grandson was born.  I will be eternally grateful for the treatment i had in the NHS, however i don't consider it was free..... It was free at point of delivery..... Myself and Husband, now my Son have paid handsomely into the kitty over the years and am now lucky enough to be back in work and paying again although i sincerely hope i don't ever have to dip into the kitty again.

 

I am currently looking into options for my reconstruction and am not opposed to paying privately if i need to.

 

Ladies good luck with your treatments wherever they are and look in your local area for support groups and don't ever be afraid to ask for support, this is a tough time and only somebody who has had a diagnosis will truly understand how you feel.

 

Take Care  Butterfly  x      

Re: Lack of support for private patients

Agree on that front. Breast surgeon came in to see me on his day off to discharge me when I was in hospital with a post-op infection. I've also been able to email consultants with questions/queries throughout my treatment. In terms of getting tests and test results, I understand things are much faster. 

Re: Lack of support for private patients

I am currently benefitting from the bonus of having private care - had reconstruction surgery earlier this week, my surgeon called in to see me the next day and ended up back in surgery to remove a blood clot. Then she's kept me in until drains can come out, we have spoken / texted or emailed each day since as she's been away. I sent her photos of a concerning swelling and she's calling in tonight en route from the airport. Don't think I'd have got that service at the general hospital. I'd have been kicked out on Tuesday then taken my chances with junior docs in A&E.

Re: Lack of support for private patients

Pastoral care could have been better where I was treated privately but I've also heard of NHS units where the breast cancer nurse left and wasn't replaced! Couldn't fault medical care though... and they have an MDT meeting every week. 

Re: Lack of support for private patients

I've had all my treatment privately and I do feel that now I've come to the surgery side of things something is lacking - I have one Breast Care Nurse but I need to make an appointment to discuss post surgery and to be honest I havent quite taken to her, but shes my only point of contact. Feeling a bit loss and alone on this. 

Re: Lack of support for private patients

I can't fault my surgeon and oncologist who are both leaders in their field in the local NHS hospital. I have heard from NHS patients who never get to see them, often delegated to their registrars.

They also attend a weekly MDT meeting where is appears they discuss both their private and NHS patients.

My surgeon also discussed all reconstruction options and with me, provided post op bras and softie prothesis. I also ordered a spare from "knittedknockers.CO

I do agree that the emotional support is lacking as is the peer support that I assume you get in a chemo unit.

I attended a Macmillan moving forward course reasonably locally. Would thoroughly recommend it and look good feel better workshop.

Re: Lack of support for private patients

Today I spoke to the breast care nurse at the private hospital in Brighton where I had chemo. I finally phoned her having texted twice over two weeks and had no reply. I told her that I feel they should offer some sort of 'Moving Forward' support (particularly as the Breast Cancer Care ones are all a minimum of 45 minutes drive from where I live) . She has asked me and a fellow chemo patient to go for a meeting to discuss all the support we feel private patients are missing. I feel pleased about this and it seems a positive step forward. I suggest anyone else having treatment privately does the same.  

Re: Lack of support for private patients

I had my treatment in Cyprus and had to source my own needs from the Nicola Jane website who,thank goodness delivered to Cyprus and usually within the week

I found the emotional support from this forum and there are many leaflets that you can download that I found very useful.

Re: Lack of support for private patients

Thank you all for your replies. Its good to know I'm not alone.  Is anyone getting any support about making decisions regarding reconstruction?  Or just dealing with what we've been through now treatment is over?

Re: Lack of support for private patients

Thank you. Yes they gave me leaflets but not the same as talking things through with someone. Everyone should be shown the different types of bras and prostheses and helped with fitting. I did get mine from Nicola Jane and they were extremely helpful but I've bought a lot of bras trying to get the right fit! Amoena not so helpful when I bought and expensive one which was really uncomfortable around the lower band. 

Re: Lack of support for private patients

I have private medical insurance but was advised by my GP to go down the NHS route because of support and follow up. I must admit I hated going for chemo in the beginning seeing everyone wired up but then heard from ladies who had their chemo at home. The chemo nurses on our unit became friends and the banter humour etc that went on between patients and nurses kept us all going. My GP also mentioned the MDT meetings they have in NHS hospitals where the professionals get together to discuss your treatment this does not happen in a private hospital each consultant does their own thing.

i cannot complain I did have a private room with own bathroom each time I was admitted so it was like being private anyway. We pay our own premiums now we are retired thinking I might have a good holiday this year and cancel the cover !!!!

I cannot complain about my treatment everything from making appts with the wig lady, headstrong, prothesis

were all done for me. There were one or two things I have complained about like a useless BC nurse but I am grateful for the treatment I received.

Re: Lack of support for private patients

I had my mastectomy and reconstruction privately but always felt like I as missing something. The NHS ladies I met seem to have more information and knew more than me. My care was second to none but I felt isolated and although my BCN was fine I just felt like another breast cancer woman and not an individual.

Re: Lack of support for private patients

Had MX and immediate recon Feb 14 as a private patient, and totally agree that the care etc whilst an inpatient is second to none but there was only access to a breast care nurse two days a week and though I am on a supposed 5 year check I am still waiting for my yearly mamogram appointment to be issued by the private hosptial and no doubt will have to chase! 

Re: Lack of support for private patients

Hi NJ

 

I got my prosthesis from the hospital where I had surgery ( NHS)

 

Did you not even get brochures for mastectomy wear suppliers?

 

if you still need to get equipped my advice would be to look online at Nicola Jayne and Amoena

I have found both to be be very helpful and they will give you telephone advice if you can't make it to a branch.

 

From speaking to women who had BC surgery privately I know you are not alone

 

Best wishes for your recovery

 

Re: Lack of support for private patients

I had my treatment private in Thailand As hubby was working there 

at the time and I found that as well. Fantastic nursing aftercare by all but .i couldn't even get a bra lol. I'd to go to Bangkok and as for prosthetics it was non existent.. I.d to buy over the Internet and hope they arrived.

 

i used this this site for most of my information and support.

Lack of support for private patients

I was diagnosed June 15,  had a mastectomy in July,  chemo and radiotherapy which finished in December.  I cannot fault my medical treatment at all but emotional and practical support such as choosing bras and prosthetics has been completely lacking. Does anyone else have similar experiences?