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

About: Mackinnon Memorial Hospital / Accident & Emergency

(as a relative),

It has taken me several weeks to even feel well enough to write this. My wife is disabled and uses a power assisted wheelchair. I provide 24/7 care for her as we cannot seem to find enough additional carers in the remote rural area in which we live. I fell ill several weeks ago and had to receive treatment at my local Health Centre 7 days a week. I was then told I needed to be admitted to hospital. I explained that I couldn’t be admitted to hospital without knowing there was care in place for my wife at home as I was her 24/7 carer. I also explained that I was one of the three responders for my wife’s emergency Telecare button and the other two were currently away from the area (most unusually).

For three weeks as my condition deteriorated and I felt more ill, I was told 7 days a week that I must be admitted to hospital and I kept telling GPs and nurses that I couldn’t leave my wife without a carer. I was repeatedly told that an emergency care package could be put in place. After three weeks of this, we discovered no emergency care package had even been requested, let alone put in place. An hour before I was admitted to the hospital the GP requested an emergency care package for my wife but nothing could be provided. This was an emergency situation. We were at crisis point but nothing could be provided locally.

Instead they offered her a place in a residential care home (which is inaccessible to her wheelchair) 26 miles from home, and from the hospital I was being admitted to (she is not a pensioner). They then offered her a place in a residential care home (also not properly accessible) approximately 80 miles from home and the hospital. At that time, she was unable to drive her wheelchair accessible vehicle due to problems with her condition. Given they said she needed to be with me at the hospital to learn how to inject my medication, etc. it was agreed that a place in a residential care home was not suitable.

My wife had to stay at home with no care. During my stay in hospital she had no access to meals, no help, care, etc. No one even asked her, or me, if she was coping. She wasn’t.

She had several stumbles and falls, one a particularly bad fall. She had joint dislocations. She was too scared to press her emergency button as she felt that if the residential care beds previously offered had been filled, she would then be sent into residential care 100+ miles away and would not be able to learn about my condition and how to administer my medication, or help me, etc. She did not sleep at night for fear of choking (part of her condition) as there was no one to help her if she did.

I was extremely concerned and worried for my wife. She was exhausted and terrified (and on more than one occasion has suggested that she is the problem and that things would be better for everyone, including the NHS, if she didn’t exist anymore). I love my wife and I don’t want her to feel like this. She seems to have had what I can only describe as a breakdown as a result of her terrifying experience. She is not the same person I knew beforehand. She is very low and still very upset. She lacks self confidence. She has repeated nightmares where she believes I am being carried out of our home on a stretcher and the door closes and she is left alone without care again. She normally works very hard but feels incapable of returning to her old self. This has had a hugely detrimental effect on the health of both of us. I don’t believe I can ever be admitted to hospital again if this is likely to happen again. My wife felt she could always stand up for herself, and for others, and is articulate. If we couldn’t get the care she needed then how many others are there out there who are less able to speak up not getting the care they need too? Something must be done to ensure this never happens again - to us or to anyone else - or some day, someone will die.

The caring profession needs to start caring or else speak up publicly as to why they can’t and do something about it.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Elaine Mead, Chief Executive, NHS Highland

Dear LS1

I was deeply saddened to read the story that you have posted on Patient Opinion, but I want to thank you for feeling strong enough to be able to share it in this way. 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 both you and your wife with the care and support that you need, and need to always respect the views of the individual.

I want to reassure you that all of these staff really do care, and would never wish to have to read an account such as the one you have posted. You clearly still feel unsupported, so I would be more than happy to meet with you, and your wife if appropriate, at your convenience to discuss and help to resolve your concerns.

Please contact me on emead@nhs.net or phone on 01463 704977 where we can arrange to speak if you feel this would be helpful.

We are successfully developing new models of care at home in conjunction with local communities and the third sector across Highland, although I am aware that this is not yet developed in your own area. You may well be able to help us, and I would be keen to talk to you about these opportunities too.

I hope that you are now recovered from your illness, and I look forward to speaking with you sometime soon.

Best wishes

Elaine

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Update posted by LS1 (a relative)

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

Response from Elaine Mead, Chief Executive, NHS Highland

Dear LS1

I know that the health and care system can be bewildering, and I will ask the local team to contact you to see if there is any written information or explanation in easy to understand language that they can give you to help you prepare for the meeting next week.

I hope that this meeting goes well, and I look forward to meeting both you and your wife to discuss your concerns at a time to suit you both.

I have posted both my phone number and email address on this site, and I would be happy for you to contact me direct, but please just be aware that it is a bank holiday on Monday the 1st August so telephones in the main offices will not be manned on that day.

Best wishes

Elaine

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Update posted by LS1 (a relative)

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

Response from Elaine Mead, Chief Executive, NHS Highland

Dear LS1

Thank you for continuing to post your concerns on the patient opinion website so that others can hear about your situation. It is good that you have made contact with me and that we will now be able to meet to discuss and resolve your concerns face to face.

I do understand what a difficult situation this is for you and undertake to speak openly and honestly to you about the health and social care services in the NHS Highland area when we meet.

In the meantime I will ask my most senior manager to investigate your concerns and respond to you in person.

I do hope that this will be helpful.

Best wishes,

Elaine

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Update posted by LS1 (a relative)

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

Response from Elaine Mead, Chief Executive, NHS Highland

Dear LS1

When we met we agreed that the most important action was to agree an Emergency Care Plan for your wife. We need your help and agreement to develop this plan.

We are currently working through your 11 pages of additional questions in the hope that this will allow us to clarify the situation well enough for you to be able to agree a way forward with your local care team.

We are all keen to help to give you and your wife the certainty that you desire.

Best wishes,

Elaine

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Update posted by LS1 (a relative)

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