Hello, grateful for some advice please - questions at end. Sorry for the long bit below. My elderly MIL (in her seventies) was previously fit and well and living fully independently up until March/April this year. My partner is her only child and we fortunately live next door to her, and always have had a close relationship, and been supporting her daily, and on hand to be around 24/7, if necessary. From around April to May she declined severely - lost a lot of weight - and her appetite, lost her mobility totally, and very fatigued etc. We had taken her to her GP and local hospital for tests etc, and they suspected some form of cancer. We eventually took her to A and E around a month ago, on the advice of 111 as we were so concerned by her deterioration, and wanted to help her and ensure she was safe. The hospital kept her in as an inpatient, and around a week or two after her admission, a firm diagnosis of High Grade B Cell Diffuse Lymphoma was made (NHL). She has been offered and she and my partner gave consent re: hospital recommendation of treatment - mini-R-CHOP - six cycles (including chemo) and started her first cycle on 11 June. We think she is in the right place and glad she is able to get continuing support in hospital.
The hospital are anticipating that she will be able to have the remaining five cycles as an outpatient from home. Obviously while she and we are impressed, thankful, appreciative for all the amazing Oncology, Haematological, medical treatment, diagnosis, tests, monitoring, and nursing care that have taken place, and are very grateful that the hospital have offered her treatment, simultaneously quite concerned about the lack of phone communication and contact in the last two or so weeks from ward doctors and consultants or anyone re: her condition, results of tests and changes in her health and condition, especially as she approaches what they consider to be the final stages as they look to prepare OT-wise prior to starting formal discharge planning.
Although they have called us into the hospital once or twice, in the first two or so weeks, to speak to consultants, and get updates and diagnosis changes at critical junctures, which was good, provided clear and concise comms on her medical progress and situation, in the last two weeks, it has been really difficult and challenging to get any phone updates from ward doctors or consultants at the hospital, and they seem to want ultimately her to go home as soon as possible, whether she is fully ready or not.
She really wants to come home, given she cannot see family at all because of lockdown, and we are concerned that her mental health is suffering and she is having to go through a lot when feeling quite isolated, it is sometimes difficult to reach her on her mobile phone, and she has had to go through a lot of physically challenging medical treatment and tests on her own separated from family in an unfamiliar environment, she wants to come home and see family again - her grandchildren, especially our adult daughter are very close to her and she is missing family terribly, and is getting quite emotional a lot when talking to us on the phone. We are trying to help her keep positive and reassure her that it won’t be too long before she is able to come home, with support. She is happy for the hospital to talk to both of us, has asked them to use me as a comms central point of contact for the family, to help support and coord. We both speak to her everyday, to see how she is, try and support her and ensure she has everything she needs in hospital.
There have been some conflicting communications as she tstarts the OT stages to her discharge planning, for her to go home. They were saying she was medically fit to discharge, via the OT, yesterday but then yesterday afternoon her oxygen saturation levels dropped to 92 percent - the threshold for taking action is 95 percent, and her blood pressure dropped (she had high blood pressure before going to hospital) and she felt weak and dizzy, and yesterday afternoon she was on oxygen as a precaution, she has had x rays to check if she has blood clots, or fluid in the lung which could compress the bottom of the lung and potentially affect the overall lung functionality, as this sort of occurance has happened previously within the last week, or week and a half. Her condition has been fluctuating a bit recently, when have phoned for updates, and have not remained consistent, in terms of reviewing the effects of the chemotherapy. Yesterday afternoon she was put on antibiotics, as a measure to address any potential infection, as precaution, and also an anti-coagulant drug as precaution, to head off the possitiblity of clots in the lung. Obviously while this could possibly be an effect of the chemotherapy she is undergoing for her Lymphoma, they are not entirely sure, and carrying out these measures and checks as a precaution, which she and we are all very grateful and appreciative, and thank them for doing this. We were concerned yesterday as we only found out about the change in her condition and the fact she was again on oxygen by accident, and neither the ward nor doctor contacted us to update - had to phone the ward to follow up.
We are glad they are not pushing for immediate discharge, although yesterday they said she was judged medically fit for discharge - with the only things left to do working with the OT to ensure she had a bed ready at home, and work out aids re: a care package (for limited reenablement). They haven’t given us a clear indication of timings - it may only be a week or may be longer, another week perhaps. The picture seems to change based on which ward doctor sees her, and there is no ultimate consistency, and we are often hearing things second hand, and family including my partner, not feeling fully involved. At the start of this week they gave my MIL the impression re: sending her home tommorow on 26 June, but the first we heard about it was from my MIL on the phone - but we hadn’t heard from anyone, including care package or discharge, and the doctor was apparently supposed to call but had not. Had to phone the doctor to make sense. As it turned out that was premature, but it was quite confusing, and all we want to do is work with the relevant teams at the hospital, to give my MIL the best situation and support, and work with them and her to support her coming home, but needed notice to do that properly for her. My partner is worried that they will press her and us for her to go home sooner than she is ready safely (because of cost grounds, and clearing hospitals re: COVID19) but while the family can understand why she wants to come home, my partner wants her to be as well and stable as possible, and she understands this too and wants whatever medical care and situation is sensible, as the current care and monitoring she is receiving can only be accessed in Hospital, and my partner would only feel comfortable about her returning home, re: her stability in terms of how she has responded to the first cycle chemo has been reviewed thoroughly enough for her to be discharged home with assurances, otherwise she might have to go back if she has a early setback.
She is not fully mobile and physical therapists have not managed to make as much progress as they want with her, with walking with a frame, as she is weak and frail from lack of eating, and sometimes scared of falling, when walking with a frame. Dieticians are also working with her. The impression we were given by the Haemotology Department (and Haemotology Chemo Nurse experts) in the chemo treatment regime that she is getting, is that it takes at least three to four weeks to effectively monitor the effects of the first cycle. She is making progress, in terms of her condition, but possibly not quite as much as they initially anticipated. We are grateful for the OT and physical therapy work and support they have so far provided.
The OT dept have contacted us this week to start planning re: home aids and limited care package - Enablement care (lasts from 1 - 6 weeks) - they think from how she has been progressing that she may not require the full six weeks, but they said they would only fund the first five days. Looks like the LA would fund the other period - the first six weeks of enablement care should be free (sometimes shared between the NHS and LA) but the OT gave the impression that she may be charged by the LA for the remainder. Nothing has been said about NHS Continuing Health Care. While we agree that Enablement care would give her the best chance of best independence and health prospects, best mental health, environment and wellbeing at home, is what she and family want, as she waits for her treatment dates to come when we will take her to the hospital for chemo, we are worried that should longer term care be needed, the NHS will fail to mention NHS CHC, or ignore her rights to be assessed for this, for her to be able to remain at home, if they don’t want to pay - and try and push her over to the LA, who would make her pay for care which she may not be required to pay for as she potentially has priority health needs (and cancer is classed as both a health condition and a disability).
My questions are:
Is the lack of contact from the hospital acceptable, or the disjointed nature of comms?. If not, what can be done to improve this?
Do she and we have the right to challenge discharge, if felt that not medically safe or appropriate to discharge at the time stated, and short further continuation needed, or measures in place at home not covering her full health needs? If so, who should we contact about this to challenge, and get put right?
What are her rights both to enablement care and funding, and also NHS Continuing Care (and assessment)?
Grateful for any views and input, either from members of the Blood Cancer UK chat community or those relevant members and experts of Blood Cancer UK team themselves. We appreciate your help, support and advice. Many thanks.