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My 69 year old husband has just been diagnosed with Myeloma and we are all quite confused about the treatment that he is going to receive. We do have private medical insurance but have been going to our local NHS hospital who have, so far, been amazing. We would love to get opinions on whether we should stick with the NHS or go private. Its all so new to us that we are still trying to figure out what the treatment involves and the best way to move forward quickly.
Although going private sounds very nice, from seeing the two in action with cancer related treatment, me with the NHS and my dad with PPP, I’d choose the NHS anyday.
I was overwhelmed with the care I received and drugs were utilised without question or delay when needed. My poor dad on the other hand had delay after delay whilst permission was sought from PPP for any drug and his care was quite poor. I honestly believe that he’d still be here today if he’d have been treated where I am.
If you’re happy with the NHS care you’re receiving at the moment, I’d stay with it.
Hi Angela
We have BUPA and my husband was diagnosed 2006. His consultant did not take private patients and although I tried to encourage Frank to go the private route, (thought he would have more individual attention) he decided to stay with NHS. Although I have had some gripes, Frank is very happy with the route he took and when he has needed MRI, PET scans etc they were readily available. Whay does your husband think. To me, the most important thing with this bl***y disease is that the patient has complete trust in his medical team and Frank does. If he feels unwell, he phones the help line at the hospital and he’s in the day unit within a couple of hours. It’s a decision your husband to make an I wish him well whatever route he takes
Love Jean
Hi Angela
My husband Ian was diagnosed in October 2012 and chose the nhs as consultant advised that he would se the same doctors. He has had really good treatment and advice from all staff.
Wishing you well.
Maureen x
Hi Angela,
Our family has been covered via private health insurance through my husband’s employment for many years. We have successfully used this insurance for short term treatment such as my son’s sports injury and my husband’s cataract surgery. The treatment was far quicker than the NHS would have been able to provide, which helps when you are trying to fit in surgery around your employment and personal commitments. However, when it comes to long term cancer treatment, based on my own experience I believe the NHS is the best way forward for patients.
Prior to my diagnosis of myeloma in 2010, I started to experience odd pains throughout my body which accumulated into severe kidney pains. My GP referred me to a private kidney specialist because we both thought I had a recurring kidney stone. After kidney investigations showed nothing unusual, I was referred to a gastro specialist due to severe pain in my ribcage and stomach area. Eventually after 3 vertebrae collapsed, an MRI scan was carried out during which the radiologist highlighted possible myeloma and I referred to a private haematologist. My subsequent myeloma treatment was excellent, but our local private hospital did not have the facilities to carry out the stem cell transplant or be able to insert a line which had to be carried out by another private hospital. My stem cell transplant procedure was undertaken at a local NHS hospital where my private consultant worked, which involved a completely different team of nurses and doctors.
During the regular assessments at the NHS hospital prior to the stem cell procedure, I was found to have low levels of iron. The NHS doctor recommended three bags of blood and a short spell in hospital, which my private consultant felt to be a little bit over the top. But I felt so much better after the blood transfusions. I went into hospital using a wheelchair through tiredness and shortness of breath, but left the hospital virtually skipping down the ward with an increased energy! The high level of care which I received whilst undergoing the high dose chemo, the district nurses visiting home for injections and subsequent stem cell treatment experience was excellent. What I immediately noticed about the NHS cancer treatment was the multi-disciplinary approach by the doctors where they worked together as a combined team consulting each other on a regular basis. I received quite a lot of advice and follow up treatment by the dietician as part of the NHS treatment.
The private health care insurance with Aviva handled most of the myeloma treatment bills, but they would sometimes refuse to pay certain bills which would involve long conversations with them to sort out payment. These are not the sort of conversations you want when you are feeling poorly and tired after a stem cell transplant. I didn’t realise Aviva set a maximum spend for some procedures and the consultant inserting the line apparently charged over their recommended rate, which again took time sort out. Aviva also restricted certain drugs to a six month treatment period. They would not fund thalidomide or Zometa for over six months.
In order to continue to receive monthly Zometa for the recommended period, I had to change from the private to NHS treatment. I have found the NHS treatment to be outstanding. My consultant is prepared to answer any questions and dedicate sufficient time to regular consultations. They review your treatment using the multi-disciplinary approach and all treatment is carried out by the team of nurses and staff which you have developed good working relationships with over the course of your treatment and follow up appointments.
However, the private health insurance can sometimes provide drugs which are not available for funding under the NHS. You are the only ones who can decide on which way to move forward with your treatment, just ask the appropriate questions to your insurer as to whether they might restrict cover on certain drugs or treatment and ask your consultant where all of your treatment will be carried out.
All the best with your treatment.
Jan x
Hi there
I would say that our treatment has been amazing with the nhs, from the consultants to Dave who brought the food and drinks trolley round. They all give 100% . Colin had private medical insurance and when Colin had back pain we went private for the MRI scan. The consultant told us it was nothing sinister, nothing that physio wouldn’t cure. What he had missed In the report from the radiographer was acute wedging at t12. Myeloma to be ruled out! It it wasn’t for Colin’s nhs Gp we would have been none the wiser and things could have been very different.
We appreciate that there are good and not so good in any profession but I’ve got to say the nhs have been great for us so far
Best of luck
Vicki and Colin x
Hi all,
I must agree, the treatment my Mum has had from the NHS has been great and I for one cannot thank them enough 🙂 I Wish you both all the best on your husbands journey.
Sorry to butt in on this post, just want to say hi to Vicki and Colin. Im sorry I have not been in touch for a while, had trouble logging in to the new site, but I have been reading and catching up with everyone. I see you have booked a holiday……about time! How are you both doing? Are you on facebook Vicki? I can keep up with Tom on there.
Love Ali x
Hi Alison
Lovely to hear from you how is your mum doing? We aren’t on face book! We need to get with the programme as they say! Yes we have finally bitten the bullet we are going to mauritius for 2 weeks! Really looking forward to it, I got told off last night for being paranoid as I want to take the thermometer with us! I have managed to get Colin to agree to take some antibiotics just in case!
We still have peaks and troughs of tiredness but touchwood all of so far…..
Vicki and Colin xx
Dear Vicki
Yes get with it! Tom and Andy and Eve are on!
Mum is good thanks, tiredness is an issue for her too. Some days worse than others and seemingly no rhyme or reason to it. Also, mysterious pains that come and then go again just as quickly….we try not to read anything into it
When Mum goes away she does take the thermometer with her, and gets emergency antibiotics from the consultant/gp. She also uses a Vicks spray that she inhales before flying/being with crowds to ward off colds. So I don’t feel you are being paranoid! Just practical.
Hope you have a wonderful holiday – you both deserve it!
Love Ali x
Vicki and Colin.
Have a great time, but take the thermometer. My wife and I are in Hawaii, with thermometer and antibiotics, first big holiday for over two years! I put Vaseline around the inside of my nose before I flew. Not paranoid at all!!!!
Enjoy it……
Regards
Tony F
Hi everyone,
I too am a newcomer to this site. I was diagnosed with MM in November and am concluding the third cycle of the eight planned for my treatment which is at my NHS hospital. All the staff are caring and friendly and have put me at ease, though, like everyone, I am unsure of what lies ahead. I am 79, so I assume the future must be uncertain, particularly as, just before my treatment started, I had a pulmonary embolism.
If my experience is anything to go on, the NHS and the McMillan Centre cannot be bettered. One thing I appreciate is that, at the regular treatment, I am meeting and chatting with others facing the same or similar situations.
Like everyone, my wife and I are focussing on living and enjoying every day.
TTFN
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