"No care cover for my disabled wife when I, her 24/7 carer, was admitted to hospital"

Dear Elaine

I note what you say in response but you should be aware that, so far, my wife and I, more than 7 weeks on from my being admitted to hospital – are unaware of anything in place to prevent the same thing from happening again. That is a terrifying prospect which does nothing to reassure us.

You state “I know that you have been in recent and personal contact with many members of the local team who are doing their best to provide you and your wife with the care and support that you need” but we would challenge that. My wife and I have not yet had an opportunity to address an emergency care plan hence we do feel unsupported. If I had to be admitted to hospital again there would seem to be nothing in place to ensure emergency cover for my wife would be provided. This frightens both of us, and will continue to do so, until we can be confident that this, and other issues, have been addressed and resolved. It should not take almost 2 months to address. My wife continues to have nightmares about her experience.

My treatment is ongoing, my wife has seen her GP, and physiotherapist, and has had to visit A&E twice. Over 3 weeks ago we had a 3 hour meeting with the District Manager where we had to repeat our whole story. We do have a case planning meeting arranged with the District Manager and 5 other members of staff next Wednesday (this is perhaps what you refer to?).

As we have never experienced such a meeting, we asked for information in hard copy to be provided beforehand to explain what the options are, etc. as we seem to constantly have to deal with people we rarely see and, when we do, they talk to us, ask questions, fill in forms for us, but produce little or nothing in writing to refer to, or as to how to contact them in the future. We also stated that we would like a chance for both of us to discuss any options between ourselves and to be able to ask questions, if decisions have to be made. We were informed that “the main purpose is to agree collectively the communication pathways” if I should need to be admitted to hospital again. It would help if the terminology used was not NHS jargon but simple plain English.

Apart from a promised agenda for the meeting, which we hope to receive next week, we have had no clear explanation of what all this means or of exactly what will be discussed – despite having stated that both myself and my wife work better with printed information in front of us, which we would have had an opportunity to read and discuss beforehand. At our meeting 3 weeks ago, the District Manager was also made aware of a number of other issues needing resolution.

Following next week’s meeting, my wife and I would like to meet with you to discuss our story and all outstanding issues, including our recent formal complaint.

We will contact you in the near future and look forward to speaking with you.

Regards

LS1

Dear Elaine

Thank you for your most recent response.

Please note that we are not stupid but the health and care system would be a lot less bewildering to all who use it if health and care system staff used plain English instead of acronyms and health and care system jargon when dealing with the users of all health and care system services. I don’t work in the health and care system and would simply like to be able to understand everything in relation to my and my wife’s health and care.

And, just to let you know, neither my wife nor I received any written information or explanation in easy to understand language to help prepare for last week’s meeting.

We find ourselves now exactly 9 weeks from the date at which I was admitted to hospital still with no Emergency Care Plan in place for my disabled wife and we have been told I could be admitted to hospital again in the future. The only difference from 9 weeks ago appears to be a dawning realisation in the health and care system that no one had previously recognised my wife as a vulnerable adult, despite her condition being well recorded but seemingly not well understood. We absolutely need health and care system professionals to be educated about her condition and how it affects her and to know what can be done to improve things for her. She continues to have terrible nightmares about her experience 9 weeks ago. Daymares continue to blight her day. We are feeling so stressed that nothing is in place to reassure us that these nightmares will not come true.

As I was unwell the other day, I asked my wife to telephone the number you provided in an earlier response, in order to meet with you to discuss our concerns at a time to suit us both, as you suggested. She was told that no date could be arranged until your PA returns from annual leave next week and that any meeting date would be at least 4 weeks away, which will mean that this matter will be outstanding for three months. It was also suggested that the meeting with you would be via telephone. We wish to meet with you face-to-face locally on Skye.

We have asked for a hard copy of the NHS Highland published plan for community care provision in the area - which must include information on the resources to be devoted to community care, the services which will be available, any plans to change existing services, assessment arrangements, including criteria for assessments, etc. We would like a hard copy of the most recent/current version of this NHS Highland Community Care Plan/Strategy and hard copies of all information in relation to planning both emergency care and ordinary care. Does it exist? Such care surely has to be planned?

My wife has telephoned Highland Council (who used to be responsible for care) and been informed that the document we seek is now NHS Highland’s responsibility. After telephoning various different departments in NHS Highland (and receiving emails about it from your Head of PR and Engagement) we seem no closer to receiving the information we seek. Perhaps you could explain why this is?

We have also been informed that although there is funding in place for a Shadow Rota trial in South Skye, the actual Shadow Rota is unlikely to be in place until possibly 3 months time or longer.

Will you please speak openly and honestly to us, and to everyone who needs health and social care services in the NHS Highland area, and explain why putting an Emergency Care Plan in place for my wife, and why giving consideration to my needs as a 24/7 carer have still to be actioned?

At our case planning meeting last week (where two staff due to attend were not present) I stated quite clearly that I have had no support while caring for my wife 24 hours a day, seven days a week, for years. No one has considered my health or my needs. This is a deplorable situation and cannot continue. I also stated that I would have to resign from being my wife’s 24/7 carer. I meant it. We cannot continue like this.

LS1

Elaine

It is now more than 2 weeks since our face-to-face meeting with you, more than 15 weeks since our awful experience, and more than 13 weeks since you received our formal complaint yet here we are with no formal response to our complaint, no Emergency Care Plan in place and no let up in our anguish, stress and concern. My wife is still, 15 weeks on, experiencing nightmares, is terrified this will happen again and feels there is no point to her existence. She has asked her GP for help with the way she is feeling, but so far the NHS has been unable to provide her with that help.

Have you not even considered that if someone had just sat down with us and said it will take over a quarter of a year to put together an Emergency Care Plan for my wife but, in the meantime, should I fall ill again and be admitted to hospital, NHS Highland will have my wife’s emergency care covered by doing X, Y or Z, that this might have provided at least some relief from the terrible stress and terror of knowing that there is nothing in place for such an eventuality? When my wife said this to her GP 2 weeks ago, he expressed surprise that no one had done this already and said that he would feed this back. A week ago, she told him that still no one had been in touch about it and asked him to contact the Integrated Team Lead to ask him to get in touch about it. An advocate has also asked for us. Still NOTHING. We fail to understand how anyone can plan my wife’s care when she is still awaiting an assessment of her care needs. A review of her care needs was due in April 2016 but has yet to happen, despite acknowledgement that her condition has deteriorated substantially in the last few years. At a case planning meeting in early August 2016 I said that I would have to resign as my wife’s 24/7 carer. I need a break and I feel too ill to continue like this. Yet nobody seems to be doing anything to relieve me. I cannot continue like this.

Despite asking numerous times, the documentation regarding NHS Highland’s plan for care provision, something which should be published and must include information on: the resources to be devoted to care; services which will be available, and any plans to change existing services; assessment arrangements, including criteria for assessments; charging policies, and arrangements for financial assessments; how to make representations and complaints; the kinds of factors an assessor may take into account, etc. has still not been produced by NHS Highland. Is this because it doesn’t exist? It looks that way and that would certainly explain why it is taking so long to produce an Emergency Care Plan, or a care needs assessment, for my wife.

Can you please resolve these and the remaining issues as soon as possible?

LS1

Elaine,

You said that you need our help and agreement to develop an Emergency Care Plan for my wife but no one seems to even want to discuss this with us despite our requests to the Integrated Team Lead via telephone and letter. Here we are now more than 20 weeks since our awful experience and still no one has discussed an Emergency Care Plan and an Anticipatory Care Plan for my wife with either of us.

Person-centred care is about focusing on the care needs of the person rather than the needs of the service. We should be equal partners in the planning of care and our opinions should be important and respected – not totally disregarded or our wishes not even sought. You should take into account our preferences, needs and strengths. This has not happened, despite us asking for it to happen.

To support us with this, you need to make sure we get information in a format that is acceptable and understandable to us to help us make decisions about my wife’s care (and treatment) and to agree, or disagree, with the plans that are being developed. We have asked and asked for this information to be provided and our requests seem to fall on deaf ears.

Person-centred care means that you plan care with the person, and you think about the effect of what you are doing on the person as a whole. This might mean compromise but being person-centred means that you always have the person’s safety, comfort and well-being uppermost in your mind.

Ensuring that we are comfortable calls for you to be aware of the things that can cause discomfort to us and taking steps to relieve them. It does NOT mean that you don’t actually talk to us or ask us what we want and then just ride roughshod over us and ignore our wishes. The preparation and use of Anticipatory and Emergency Care Plans should not be a tick box exercise but should be essential to providing safe and essential care to people with a long term health condition, such as my wife. The impression we are currently being given is that no one cares enough to communicate with us or to take into account our preferences and my wife’s needs, every day, and in an emergency.

We need answers NOW to all of the questions which we sent you over 5 weeks ago and we need the other information which we have requested repeatedly. At the moment NHS Highland appear to be asking us to agree to something which no one seems to want to explain and discuss with us. We have questions but no one seems to want to hear or answer any of them. That is like asking us to sign a contract without even reading or understanding its contents and we will not do that.

At a meeting on 3rd August, I resigned as my wife’s main carer but the District Manager, who was at that meeting, says she has no recollection of this – yet others in attendance at that meeting have confirmed that I did. Unfortunately, and against my wishes, I have had to continue as my wife’s main carer (otherwise she would have suffered) because no one in NHS Highland seems to have taken me seriously and, despite being ill since then, I have really struggled in the role. Other NHS staff have informed me that they had to spend days in bed to get over the same virus I have - but I have not had the luxury of spending days in bed because I have had to provide the care for my wife because NHS Highland don’t seem to care enough about me, or my wife. I am so fatigued. I am serious when I say that I simply cannot carry on like this. I cannot cope. NHS Highland have had the opportunity to improve matters but seem only to have added to our stress, anxiety, ill health and distress and have ignored our wishes and the fact that my wife’s condition has deteriorated over the last few years and that she needed additional carers long ago. Please do something NOW to ensure my wife gets the person-centred care she requires. You need to restore our faith and trust in NHS Highland.

LS1