"End of life Care Journey"

About: Norfolk Community Health and Care NHS Trust The Queen Elizabeth Hospital (King's Lynn)

(as a relative),

When my step-father was diagnosed with cancer, 9 months before he passed away, Macmillan nurses were mentioned and after 6 months when needed they began calling him monthly to see how things were going. My Mums perception, and maybe that of many others, was that Macmillan would provide help in the form of advice and hands on support throughout the journey. In reality, as lovely as the Macmillan team were, my Mum his main carer felt they were not as hands on as she had anticipated and felt that they were not the right fit for her – my Mother also felt her relationship with them was strained.

I knew about the hospice at home scheme and enquired about switching the care from Macmillan to Hospice at home. Although at first a little reluctant to do so (Macmillan may have felt they had built up a relationship with my stepfather and knowledge about his condition that may have compromised his care if the carers were changed) we did move his care to Hospice at Home. (In hind sight I think that my family were at that awful mid-way point where support and care was needed by the family but in the view of medical professionals at that point there were limitations as to what they could offer. )

The hospice at home team once in place were wonderful, they were compassionate and gave a higher level of care when they interacted with my step-father. My mother felt they were gentler and more approachable, she said they were the only ones who asked how she was managing, how she was feeling, focused on her and not just my step-father.

Care for a cancer patient covers all different areas from treatment and different appointments at a hospital through to palliative care whether at home, in a hospice or a hospital via specialist centres and GP services.

A great deal of my stepfather’s care was at home although some was also at the Queen Elizabeth hospital. His oncology consultant was Doctor Nicola Ainsworth, I can honestly say from the point of diagnosis to his last appointment she was wonderful, she was honest, knowledgeable, spoke in plain English and took time to explain things fully. She was also extremely good at reinforcing what we had been told at earlier appointments. (My parents may have heard and acknowledged his palliative diagnosis but that still needed repeating at times. ) Due to his complex symptoms we also had appointments with Doctor Biddy Bassam, who was equally as wonderful as Doctor Ainsworth.

The care from the hospital staff when he got admitted from time to time was good – there was quite a bit of waiting around but generally the care was good. We did learn that my stepfather could be fast-tracked when he needed to go for blood tests – but only after he was late for an appointment with the consultant as he had waited for his turn in the routine queue. If we had known about fast-tracking it would have eased the stress for both my step-father and my mother. It’s a small piece of information that could have a big impact.

My step-father was also at the Priscilla Bacon Hospice in Norwich for specialist palliative care symptom control for a month, the care he received whilst there was second to none with such a personal touch from all the nurses. We were told that an occupational therapist would assess his needs once at home when he was discharged from the Priscilla Bacon Hospice. I’m not sure why the OT assessment was not carried out but this caused problems for my mother in caring for him. Frustratingly the Macmillan nurses would ask my mother what she needed – without the OT assessment my mother was in no position to know what was available so found it difficult to identify what would make it easier for her and my step-father to manage at home. In the end a family member called the hospital and had to be quite persistent in asking for equipment to help with looking after my step-father. She did get a wheel chair to be able to wheel him from the bedroom to the bathroom which helped with washing, these were delivered within 48 hours of requesting them.

One of the biggest disappointments was the way in which my step-father was ‘treated’ by one of the local GPs. His own GP was excellent, she did all she could to get the support in place, she visited my mother before she herself went on leave and kept tabs on my step-father’s condition whilst away and was there with her condolences when she heard he had passed away. However a review was carried out by one of the other doctors at the surgery making a house call during her absence. During the review he did not actually see my step-father, he spoke to my mother who broke down at one point but no words of comfort were given or even eye contact!

On another occasion the district nurse asked the surgery to carry out a drug review on my step-father. This was at 10: 00 am in the morning by 2: 00 pm we had not heard from the surgery so I called them only to be told the doctor would not be making a house call –this was the same GP who made a house call but did not see my step-father. I then spoke to another GP who carried out a drug review ‘remotely’ and I was then invited to collect the prescription from the surgery. At times it felt like an obstructive rather than supportive service. I feel that GPs needed to work with the community teams and when dealing with end of life patients and their families to show warmth and empathy, to actually see the patient.

The community teams were great and the hospice team were fabulous – they never promised anything they could not deliver regarding my step-father’s care and always followed up with any action they had agreed to. There was just a small communication breakdown we experienced. When my step-father passed away the district nursing team was informed by the hospice but it was not made clear that the district nurse would need to come and remove the syringe drive before the undertaker could remove the body. We had to call the district nurses and find out when they could do this so it was about three hours before the undertakers could do what they needed to.

Other than that everything has been fantastic.

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Response from Christine Little, Patient Experience Lead, Norfolk Community Health and Care NHS Trust

Hello Otter367

First of all, please accept my condolences for your step father and thank you for taking time to share his end of life care journey with us. On reading and reflecting upon your story there are many aspects which have worked well for your step father and for your mother which is really pleasing and reassuring to read but diasppointing to read of other aspects which have not been so good. Where good care, treatment and support are given in the manner you have described, this is defintely what we strive for within the NHS and what our staff hold as a key value in our trust.

We are always disappointed when patients do not receive the appropriate access to a team and appreciate the frustration this causes families when caring for their loved ones during difficult times. Your story is very helpful for us in understanding what really matters to patients and their carers and how we can improve the care we deliver.

I will ensure your story is highlighted to all teams concerned within the Trust but would also appreciate if you would be wiilling to contact me directly on 01603 697376 to talk through and understand more about your experiences you have shared with us.

Kind regards

Christine Little, Patient Experience Lead

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Response from Rebecca Meyrick, Director of Care, The Norfolk Hospice Tapping House

Hello Otter 367,

Thank you so much for your feedback. Your story highlights just how complex care is for dying people and their families. There are so many agencies involved which must feel overwhelming at times. It is really helpful for us to hear where the weakness in the system are. It is only through understanding how people experience care that we can learn where improvement is needed. So the more critical you can be about what works well and what doesn't, the better. I do hope you take up Christine Little's offer of a conversation to discuss some of the more difficult aspects.

I'm so glad to hear that you found the care from our Hospice at Home team at The Norfolk Hospice was good, and that your step-father experienced kindness and compassion. The Palliative Nursing Assistance include the wider family and support network in the care that they give and consider this an equally important aspect of hospice nursing. The Registered Nurses in the team work closely with the Macmillan nurses, calling on them when more complex symptoms or distress is experienced by the person. The teams meet regularly each week and we are doing all we can to improve communication and care so that things hopefully work together more seamlessly in the future. Feedback such as yours, helps us in doing this.

So, thank you again for posting your story. And it is good to know that contact here continues as our bereavement team supports your mother through the huge adjustment that she faces.

With best wishes


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