"End of life care at Priscilla Bacon Lodge during the COVID crisis"

About: Colman Hospital Norfolk & Norwich University Hospital / Older people's healthcare

(as a relative),

I am disappointed with the visiting restrictions surrounding the COVID crisis. My father was transferred to PBL for end of life care post-COVID. The NNUH was much more relaxed in terms of visiting for end of life patients i.e. close family and no time restrictions. PBL is: the same person can only visit for the duration of stay and for a maximum of 1 hour per day. If the persons starts to shows signs of imminent death then you cant visit if you have had your quota for the day!

I find this baffling for a facility dedicated to EOL care! I don't understand why the 1-hour rule is relevant for IPC issues? I'm visiting someone on a COVID bay so they already have COVID. I have also had COVID and therefore cannot see the risk? I thought the government stance was that you should relax these rules for someone in the last days of their life?

I appreciate you are a different Trust to NNUH but you should all be broadly following the same rules surrounding visiting and be following the government.

I've also got to say that the bay is not what I expected for EOL care, its very clinical. I am a health care professional myself but thought there may be some 'homely' touches to the bay to make it feel less 'clinical' for the patients and relatives. Whilst I highly appreciate the care and dedication from the staff I feel you could look at this as a Trust.

Simple things such as take away the monotony of the 'white clinical' feel. Put some colourful pictures up at the very least? I was a bit surprised to see this after never hearing anything negative about PBL. As a hospice type facility, I would have thought these issues would not be apparent.

Simple things like this can help the patients and relatives have a peaceful death and assist with any post-traumatic stress. I am more than happy to assist and give some ideas from an external perspective. The entrance to PBL is colourful but this stops as soon as you reach the bays. EOL facilities need to decorated differently to usual healthcare facilities. I appreciate IPC, but pictures do not interfere with IPC requirements at all.

No issue with staff, they just weren't aware Dad had a CD player, didn't have his glasses on and TV not on. The glasses would help with one of his senses for his EOL care as we don't know if he can still see, but if he can, the glasses would help. All Dads belongings were still in bags, I thought all property was documented on arrival. I explained CD's would help Dad, again with his senses, but it appears they weren't aware he had this in his property.

I am highly supportive of the staff, especially with the COVID crisis, so please don't take my comments critically. Hopefully, they can help you to see from an external perspective of someone who has never had to use PBL before. A doctor called me to explain Dad had arrived but I think a nursing call is required to go through Dads other needs other than his acute medical/nursing needs which was handed over.

These things are important for EOL care and can really help a patient and family in their relatives last few days. This can assist with the patient's distress and the relative's grief process. By a nursing relative handover I mean what has happened twice at the NNUH when a dementia nurse has called and gone through his 'This is me Passport'. To give examples, things to talk about with the patient (in my fathers case his cat who he adores), favourite TV (you have loads of channels, and free not like the NNUH), favourite music, do they want headphones on, religious needs, personal care, bed positioning, what they were like before the palliative time etc.

More of a social gathering of information but exactly similar to the passport I mentioned. To me, the more I write it seems like Dad has been dumped here and we are just waiting for him to die. It really isn't what I thought the EOL period would be like, make us feel like Dad is important to you, don't dump him in a bed with no glasses on, belongings still in bags, no stimulation from TV or music. I encouraged the NNUH to put Dad in a hospice and the care was great with calls from consultants etc. I really thought PBL was the place to be for someones last few days but at the moment I feel quite upset by the, what seems to be, lack of organisational care for my Father.

It saddens me to say I wouldn't actually recommend PBL because of this. If I could, I would have Dad at his flat but this is impossible due to stairs and I would have nursed him myself. It just feels Dad is unimportant as you haven't found out anything 'personal and social' about him, just the nursing and medical handovers. These are important things as otherwise the dementia passport 'this is me' document wouldn't exist. I would have thought an EOL facility would have been different and much more switched on to these needs, so I am quite surprised.

Mainly, I didn't want Dad to die alone in the NNUH in a side room, so I am glad of the care provided by PBL and the nurses being with Dad when he passes. Again, a lot of these issues are Trust-wide and out of the hands of the nurses. But a few points described may assist with the family and patient, the grief process and the final few days of life. Palliative care in my job is an interest of mine and I go the extra mile as I know what effect it can have on families and the patient. I have experienced the death of a young friend with family present and the experience was peaceful. I cannot think how this situation with my Father will be the same due to the issues I've raised and the overcompensating that the Trust is doing with IPC which is in contradiction to Government advice for visiting imminent EOL patients.

Responses

Response from Sarah Lynam, PALS Manager, Norfolk and Norwich University Hospitals NHS Foundation Trust 2 months ago
Sarah Lynam
PALS Manager,
Norfolk and Norwich University Hospitals NHS Foundation Trust
Submitted on 05/05/2020 at 12:53
Published on Care Opinion at 12:53


Hello,

I am sorry to hear about the death of your father and your experiences at the end of his life.

I am reading this as a member of staff at the Norfolk and Norwich University Hospital, thank-you four your kind comments about the Norfolk and Norwich University Hospital, I will pass on these comments to our Palliative care team here at the hospital.

If you would like me to pass on your comment to NCHC who manage PBL do let me know.

Receiving feeback such as yours is valuable, so I thank you for doing so.

Kindest Regards,

Sarah Lynam

PALS Manager

NNUH

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Response from Christine Little, Patient Experience Lead, Norfolk Community Health and Care NHS Trust 2 months ago
We are preparing to make a change
Christine Little
Patient Experience Lead,
Norfolk Community Health and Care NHS Trust

Ensure the patient, carer or family member voice and experience is heard, acted upon and used to help services know when care and treatment works well and where it can be improved.

Submitted on 07/05/2020 at 17:27
Published on Care Opinion on 08/05/2020 at 00:47


Hello

Thank you for taking the time to share your experiences and suggestions regarding visiting your dad at PBL during this difficult time. Sorry to learn that you feel disappointed with visiting restrictions, aspects of care of your dad and the ward environment. I have highlighted your feedback and concerns to our Head of Palliative Care and our Director of Nursing.

You have given a number of points which they would like to respond to as soon as they can. If you felt you could, it would be really helpful, in order to resolve your concerns as quickly as possible, if you could contact us directly, either by raising with the staff at PBL tel: 01603 255720 or contacting our Complaints Officer complaints@nchc.nhs.uk Tel 01603 697381.

Kind regards

Christine Little

Patient Experience Lead, Norfolk Community Health and Care NHS Trust

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