"End of life/palliative care experience"

About: Ellen's Glen House

(as a relative),

My 82 year old father was admitted to the Edinburgh Royal Infirmary, in October 2013 and he was very quickly diagnosed with end-stage stomach cancer. It was suggested that he be transferred to an NHS Continuing Care facility. Ellen’s Glen hospital was highly recommended to us by a friend (and NHS worker) and so we were delighted when the consultant confirmed that a bed had been found for my father there. Up until this point, we as a family, had no idea of what services a Continuing Care Facility offered, we soon found out a high proportion of patients go there to die, which would mean that Continuing Care was in fact a hospice facility. Not so (and more of this later).

On transfer to Ellen’s Glen, my father, although suffering from early-stage vascular dementia, was conscious, able to communicate, drinking lots and eating little and his pain was being managed by oral painkillers. His mobility was poor, he was unsteady on his feet and was deemed a high risk for falls. Within a few days it became clear to me (his daughter), that his condition was worsening, he was becoming weaker and experiencing more pain. On a number of occasions I spoke to staff members to highlight my concerns and asked for his condition to be reassessed, with specific regard to pain management and the issue of him falling out of bed when trying to use the bathroom.

Family members visited my father at different times every day and we all soon noticed a number of issues regarding staffing levels.

The staffing levels were clearly too low as many of the patients had complex conditions requiring intensive nursing care. Patient’s buzzers were constantly ringing, with some patients also continually calling for help. Lots of changes of staff – which is very confusing and distressing for someone suffering from dementia. Staff sickness levels seemed to be high, meaning that bank and agency staff were continually being called in to cover.

Exactly a week before my father died, my family and I visited him. We found him in a distressed state, clearly in a lot of pain, and he had tried to get out of bed to use the bathroom. We called a nurse and asked for immediate pain relief. This took some time to organise. We expressed our concerns regarding my father’s pain relief and lack of pain management and the nurse confirmed that they were aware that my father was hiding his oral pain relief “as he didn’t want to take it”. Given that my father was confused, dehydrated and suffering from dementia, we felt that the staff should have been more responsive and we requested that a syringe driver be set up for him as his pain was clearly not being managed. The nurse said that wouldn’t be possible, or appropriate and would start with injecting small amounts of pain relief. We spent some time with staff that evening, outlining our concerns, emphasising that my father was too weak to use a normal cup, and that he needed help and encouragement to drink. We were given reassurances that staff would monitor my father more closely and make sure his pain relief was administered by injection.

The next morning my brother and I visited early. What we saw will haunt us for ever. We found my father in an even more distressed stated, half undressed, in soiled underwear, hanging off the bed, shouting for help. There were several large ceramic mugs of tea and cups of water on his side table, which he was too weak to lift to drink.

We demanded to see a senior member of staff. The staff member apologised and said, “ I am sorry that you saw your father like that”. We related the events and discussions of the previous day. The staff member was visibly shaken and upset. They returned to speak to me in my father’s room, and had been crying, it was obvious. In the meantime staff come and go, cleaning the room, cleaning my father and STILL we wait for pain relief. What is taking SO long? The staff who are cleaning my father are on the verge of tears, one says “I am so sorry”. They look ashamed and embarrassed.

Another staff member returns alone to reassure us. They have been wonderful, compassionate and caring in all my dealings with them. Now they look humiliated. Another staff member who is choking back tears.

It becomes clear to us over this period that the home was originally resourced based on simple nursing care needs for residents but this home now has people like my father with very complex palliative care needs. The home simply cannot cope with the demands now being placed on it.

My father finally received a syringe driver on the Friday, only to be told that there was no Doctor on duty at the weekend – only an on-call locum doctor who could be called in emergencies.

We asked medical staff to ensure that the drug levels would be adequate to sedate my father and ensure he would be pain-free. However, it quickly became clear that this wasn’t the case. He was experiencing break through pain every 1-2hrs. This meant that our family had to stay with my father over the whole weekend to ensure that we could get staff to respond as soon as his pain broke through. It was a very stressful weekend as my father still wasn’t pain free and we muddled through as best we could. At no point did any staff member offer to contact the on-call doctor to adjust the meds in his syringe driver. This was eventually done on the Monday when the doctor was back on duty.

Over that particular weekend, 4 patients died at Ellen’s Glen. One of which I witnessed coughing, and choking and his buzzer went unanswered. We found another patient collapsed just outside their room. She had been calling for help and no one came. I had to help one until my brothers could locate a member of staff. This took some time. We were so concerned about patient safety at this point that I took the decision to contact a minister in Scottish Government. I spoke to their office and explained that due to the “dangerously low staffing levels” we felt that patient care was being severely compromised and that someone needed to intervene. We were informed that we should go through the relevant NHS channels to highlight our complaint.

I would like to make it clear that without exception, every member of staff who came into contact with my father, was polite, caring, compassionate and clearly experienced in palliative nursing care. They all expressed the wish that “they could do more”. However, the staffing levels at Ellen’s Glen do not allow for the appropriate end of life care to be given. There just isn’t enough staff or time to tend to the complex needs of so many patients.

We expected a dignified and pain-free end of life experience for my father.

Indeed, that very statement can be found in the government guideline: Living and Dying Well: “ our aim is to ensure the delivery of high quality palliative care to everyone in Scotland on the basis of clinical need not diagnosis, and according to established principles of equity and personal dignity”.

We only get to say goodbye once to a loved one and sadly the last words my father spoke, in pain and distress were: “help me, please someone help me, I’m dying”.

I will never be able to erase that horrendously, traumatic memory.

The facts speak for themselves, patient safety, human rights and dignity are being compromised due to inappropriate staffing levels. This is not just my opinion. May I direct you to the RCN report: Guidance on Safe Nurse Staffing Levels in the UK, where it states:

"in the current financial context there is a real danger that health care providers will look to reduce staffing as a means of achieving short-term savings - but without consideration of the long-term costs or risk to patient care. Fiscally-led changes to care delivery need to be risk assessed for the potential impact on staffing and patient care".

If anyone within the NHS, Scottish Patient Safety, Health Improvement Scotland, Royal College of Nursing or any other official body would like to speak to me further, I would welcome the opportunity to discuss our experiences to ensure that no one else is exposed to needless suffering. Thank you.

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Response from Stuart Wilson, Director of Communications and Public Affairs, NHS Lothian

Dear Coe,

Firstly, I would like to thank you for sharing your story: it must have been a difficult thing for you to do. I would like to convey my sympathy on the loss of your father in these circumstances. I am very sorry that your experience of care at Ellen's Glen was a negative one and offer my personal apology that this has been the case. We are aware of this story and the fact that you have already raised it in other ways.

The service remains concerned to hear of your experience and is keen for you to contact us directly so that we may learn more about it and improve the service for all patients.

We would really like to take the opportunity to ask you to consider taking the formal complaints route which could include the chance to meet with senior managers to discuss your father's care in more detail. You have been offered this opportunity before and I know that it may be difficult for you to go over your father's experience again, but we would appreciate you giving it some more thought.

I would also like to let you know that Ellen's Glen has a number of systems in place to audit care and a number of programmes and practices to improve care. As you might appreciate, in many areas of the NHS, our staffing levels are challenging but NHS Lothian has given the service £181,000 this year to ensure it is staffed appropriately to support the delivery of safe, effective and person-centred care. In addition, there have been a number of inspection visits to Ellen's Glen in recent months and the feedback we have had about the service and staff has been very positive indeed. We have also had a number of positive comments about the care and staff at Ellen’s Glen from patients and carers recently.

However, this has not been your experience as I can see and I apologise for this. I would really appreciate you getting back in contact with us to help us learn how we may improve the service for all patients.

I can be contacted directly on stuart.wilson3@nhs.net.

Yours sincerely,

Stuart R Wilson

Director of Communications and Public Affairs NHS Lothian.

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Response from Craig White, Divisional Clinical Lead, Directorate of Health Quality and Strategy, Scottish Government

picture of Craig White

Dear Coe

I was saddened to read of the distress that was (and clearly still is) associated with your experience - including the distress you noted in the staff at Ellen's Glen when your father was there. I would like to add my own personal expression of regret and apology for this extremely upsetting sequence of events.

It is so important to ensure that end of life care is of the highest quality, with compassionate care and comfort being provided on an ongoing basis; provided by staff who are appropriately supported to provide such high quality care.

I recognise that you want to make sure that other people don't have an experience like this, leaving them with ongoing distress and traumatic memories of the type that you have outlined. I can see that NHS Lothian are keen to meet with you to discuss how they can consider the factors that might have contributed to variations in the quality of care provision. I hope you feel able to do that. NHSScotland is committed to learning when things go wrong, as it so clearly did with your experience.

I would very much appreciate the chance to meet you too - in my role as the Chair of the National Advisory Group for Palliative and End of Life Care here at Scottish Government. My wish would be that seeing you in person, hearing first hand the impact about what happened would help me make a personal connection that could inform national thinking and planning about quality improvements in end of life care.

It may even be possible that, in time and through our being in contact, I can in some small way support some new experiences/associations with these past events. This may result in something positive eventually coming from what was a most dreadful time for you. I have found this happening with people I have met with similar experiences when the system has let them down. Let me know your thoughts on this proposal when/if you feel able.

Thank you again for highlighting the importance of getting end of life care right for everyone every time this is required across the NHS in Scotland.

Yours respectfully,

Craig White

Professor Craig A White

Divisional Clinical Lead, The Quality Unit

Scottish Government

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Update posted by Coe (a relative)

Response to Stuart Wilson, Director of Communications NHS

Dear Stuart

Thank you for your response.

I would like to make the following comments:

1. Please accept my posting on Patient Opinion as our formal complaint to the NHS. I am sure you can capture the information and process it on our behalf. I have no wish to dwell any further on the painful details of my father's last days.

2. As a family, some of whom work within the NHS, we are well aware of the systems which are in place to audit NHS environments. These systems rely heavily on announced visits, which by their very nature are not the best way to build an accurate picture. I know from experience that money, resources and people are invested prior to an inspection - it is understandable that staff want to appear to be positive and able to cope with difficult and challenging working environments. However, this can mean that actual important issues are never highlighted or addressed.

3. You mention that NHS Lothian has given "the service" £181,000 to ensure it is staffed appropriately. For the sake of clarity, can you confirm that an additional £181,000 has been allocated only to Ellen's Glen, specifically ring-fenced for additional staffing? Given your quoted spending figure of £181,000 at Ellen’s Glen and our father’s experience there, how much MORE money would need to be set aside to deliver an acceptable level of care at that home? What plans do you have in place to ensure that these additional funds will be made available given the financial challenges to NHS Lothian you allude to?”.Does this mean that a thorough review of staffing levels has taken place, shortfalls identified and that the staffing costs have been increased permanently? This figure in isolation is meaningless other than to demonstrate that NHS lothian is doing something to address the issue of dangerously low staffing levels.

4. Re patient/staff feedback - whilst it is encouraging to hear that you have received some positive feedback recently, this comment simply informs the reader that things have improved, without being absolutely specific about what actual improvement has taken place.

To summarise, I feel I have clearly expressed my complaint and concerns regarding low staffing levels and lack of continuity of care.

I would anticipate that the next step would be for my siblings and me to meet with those responsible for setting the staffing levels within Ellen's Glen. The same people who despite repeated requests from senior staff to address the "dangerously low staffing levels" (their words, not mine), failed to do so. We would like to understand why this was allowed to happen and listen to what steps have been taken to ensure that staffing levels are appropriately set when providing end of life care.

(email provided)

I look forward to hearing from you.

Update posted by Coe (a relative)

Response to Professor Craig White:

Dear Craig

Thank you for your response.

I would welcome the opportunity to meet with you to discuss how our traumatic experience could inform national thinking and planning with regard to quality improvements in end of life care.

Perhaps Patient Opinion could forward your contact details to me?

Thank you

Response from Craig White, Divisional Clinical Lead, Directorate of Health Quality and Strategy, Scottish Government

picture of Craig White

Dear Coe

If you email me at craig.white@scotland.gsi.gov.uk then we can look at some options for mutually convenient times and locations to meet up?

Many thanks for getting back to me,

Craig W

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Response from Healthcare Improvement Scotland

We are so sorry to hear about you and your family’s experience and really appreciate you sharing your experience on Patient Opinion and on the phone directly with myself. We note that you have lodged a formal complaint with NHS Lothian and that you will meet with Professor Craig White, Chair of the National Advisory Group for Palliative and End of Life Care at Scottish Government. For our own part, we will draw from the experience you have shared to help us shape discussions about our future scrutiny activity to support improvements in patient care.

Our condolences to you and your family.

Jacqui Macrae

Head of Quality of Care and Service Review

Healthcare Improvement Scotland

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Update posted by Coe (a relative)

Further response to Stuart Wilson, Director of Communications and Public Affairs, NHS Lothian.

Firstly, I would like to say that I am very disappointed that you have chosen not to respond to my questions of 23/9/14. Perhaps you would do me the courtesy of replying?

Secondly, I would appreciate clarification on a point you raised in your initial response to me on 18/9/14, where you state: "In addition, there have been a number of inspection visits to Ellen's Glen in recent months and the feedback we have had about the service and staff has been very positive indeed".

Given that NHS Continuing Care hospitals have "fallen through the net" and are not subject to official external inspections by Healthcare Improvement Scotland or indeed any other external body, I would be grateful if you could clarify who carried out the inspections and when they took place. Indeed, it would be very helpful to have sight of this documentation, given that HIS inspection reports are in the public domain and readily accessible.

I would appreciate you giving this your immediate attention in order that I have all the appropriate information for my forthcoming meeting with the NHS.

Thank you.

Response from Stuart Wilson, Director of Communications and Public Affairs, NHS Lothian

Dear Coe,

My sincere apologies for not responding via Patient Opinion.

You will be aware that you contacted me via e-mail and that I put the service in touch with you for a meeting. I would apologise for not answering here but I had hoped we could address the issues at the meeting.

In specific answer to your questions, the visits I mentioned are unannounced. There are two tiers of inspection one from an NHS Lothian Team completely independent from the Community Health Partnership and these happen approximately every 18 months. Then an internal team which has external people I.e. infection control, estates and domestics on it including a patient representative not from the actual inpatient area enables us to audit all areas on a yearly basis.

The audits are twofold on something we call a PQI or Patient Quality Indicators audit which mirrors the Health Environment Inspectorate inspections and Older People in Acute Care which is an audit developed nationally about the experience factors. We have also implemented this as, whilst Ellen’s Glen is not an acute hospital, the experience factors are just as important in a more downstream facility.

All of these audits are unannounced. There would be no point in doing them announced as we would then not learn about improvements required. Each area then has an action plan developed around the areas of improvement and we then work to implement them.

Ellen’s Glen is subject to National Health Environment Inspections and was added to the inspection regime when community hospitals were added.

Documentation on these visits is available and I would be happy to share it with you at the meeting.

Secondly the £181,000 is being focussed on the three frail elderly wards to firstly help reduce variation I.e. improve skill mix of staff. However we do know this is not the full answer to challenges we have. NHS Lothian is introducing e rostering and safe care which will commence being rolled out from April 2015 and this will enable us to measure patient acuity and set staffing levels more scientifically than is currently the case. We run the national workforce planning tools yearly (this is mandatory from the Government). Mental health wards were done in August and the Frail Elderly wards commenced on the 6th October.

Finally, as you will be aware a meeting has been set up with the Chief Nurse for Edinburgh CHP, the Clinical Nurse Manager for IPCC and a Chief Nurse from the Acute Division to meet with you and your brothers on the 14th November.

I trust and hope that meeting will go a long way to answering your questions in more detail.

Yours sincerely,

Stuart Wilson

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Update posted by Coe (a relative)

Thank you for finally responding and providing detailed answers to my questions. This will help inform our discussions at our forthcoming meeting.

The reason I contacted you via Patient Opinion is that you did not reply to my personal email to you, nor did you email me to inform me you had passed my details to the Chief Nurse to take our complaint forward.

Thank you.