I worry about varying standards of healthcare.
My Mum is currently having a course of chemo after discovering her second bout of breast cancer. She’s a healthy lady who doesn’t drink or smoke. She’s intelligent and she asks the right questions during appointments. My concern is that despite this, she’s receiving a very poor experience of healthcare from her local health authority and even worse communication from her doctor… who appears to be doing everything he can to avoid telling her important information about her treatment.
Now I don’t know, but I get the impression that I’ve been pretty lucky – the people in Bedfordshire who are looking after me (note looking after) are efficient, kind, caring, communicative and generally have treated me extremely well. During my visits to the Primrose Unit I have never seen any upset patients and I’m not aware of any complaints about the local team. (Whether I would be aware, I don’t know, but I think that it’s a good sign).
My Mum’s experience in another area of the country is not so great. There’s no dedicated cancer wing, and the hospital seems under-resourced and under pressure judging by the way the chemo has been administered. The nurses are not running saline in for long enough before and after the chemo drugs. Some nurses are turning the speed of the equipment up just to get finished quicker, meaning that my Mum is in pain whilst having the treatment (even when she asks them to slow it down she is sometimes ignored). This makes me very angry indeed. I am sure there are reasons that the nurses are doing this, but they have nothing to do with my Mum, and she shouldn’t be treated like this.
Thing is, my Mum and Dad are both quite capable of asking the right questions and talking to doctors on a level that allows them to explain their rationale for the course of treatment. The fact that my Mum’s Doctor is not talking to them and indeed, appears to be avoiding them tells me all I need to know about the fact that this doctor is not making decisions that are medically in my Mum’s best interests.
Is this the best we should expect?
My Mum has had problems with the fact that her veins were not flushed through with saline after her first 4 rounds of chemo – so her arm reacted badly – she now has a huge area of inflammation on her arm which feels like it’s a huge burn – and she has been told it is cellulitis and phlebitis.
This week, she went to an appointment and her doctor discussed with my parents the use of a PICC line (Peripherally Inserted Central Catheter) because Mum now has no usable veins on her arms – one is inflamed, the other is the arm with no lymph nodes, which everybody has said you should never allow to be used for injections and you should take care not to damage for fear of lymphoedema.
Straightforward and makes sense. Now… suddenly my Mum gets a call from the hospital calling her in for her next round of chemo, but when asked about the PICC they say “no, you’re not having one, we’re going to use your arm”. What? Why? How?!
So my folks then ask what’s going on. Not only does the doctor not have a secretary who can answer any questions (in fact she denies that it’s even her job really to deal with his enquiries, she’s part of a different department, she says) but nobody in this place seems to talk to each other. This doctor should be treating my Mum with respect and giving her the information she needs about her treatment plan if she wants it, but so far that has been sadly lacking.
There are breast care nurses doing their best to scurry about and find out what’s going on, but the appearance to me as an outsider is that the department is severely disorganised and the doctor has gone AWOL – which immediately makes me distrust what they are saying and want to question what is going on.
Why would a doctor agree a course of treatment with someone, then “change his mind” after the appointment and refuse to return their calls asking him to explain why he has changed his mind?
The thing is, whilst the doctor might well be qualified to make these decisions, his inability to articulate them face-to-face with my parents makes me suspicious that they are not based on the best interests of my mother, and instead are about him trying to save money. Either way, the fact is that the healthcare team there are hideously poor at communication – which is disastrous and wastes both their time and their patients’ time.
If you believe someone needs a PICC line, you don’t take that decision lightly, you certainly don’t reverse it without the patient’s involvement, and you certainly do explain yourself to the patient clearly and with sufficient information. Simple.
NO WAY would I agree a course of treatment during a medical appointment and then allow the opposite to happen straight afterward. Would you?!
Is this poor standard of care just something older women experience?
An article today from Breast Cancer Care suggests that older women cannot expect the same standard of care in the NHS and wants to work to improve this. The study is focused on the over 70s which is older than my Mum – who isn’t an “old lady” and she doesn’t get pushed around! Regardless, nobody should accept poor treatment and if someone like my Mum feels like she’s being messed about, what hope do older ladies have, particularly if they can’t articulate their concerns as well as my Mum can?
The fact is, this doctor’s actions have put my Mum under additional stress because he’s been inconsistent in his recommendations and also failed to explain himself. Uncertainty and stress could affect Mum’s health and her ability to fight off infection. Chemo is stressful enough on its own, as I only too well, so this is the last thing she needs.
My Mum shouldn’t be made to feel she’s just being “treated like a number”. I think it’s completely unreasonable and I don’t think she should accept it. I certainly don’t think it’s acceptable.
Do you agree?
I’ve been knockin’ on the door that holds the throne
I’ve been lookin’ for the map that leads me home
I’ve been stumblin’ on good hearts turned to stone
The road of good intentions has gone dry as bone
We take care of our own
We take care of our own
Wherever this flag’s flown
We take care of our own
Lyrics by Bruce Springsteen
Reblogged this on Apple & Eve Health Coalition and commented:
cancer, cellulitis, chemo, doctor, doctors communication, healthcare, pain, Patient, Peripherally inserted central catheter, phlebitis, poor communication, standards of care, stress
Thank you, lovely daughter. We are determined people! xx