For those of you who dont know my story, my beloved partner died last September. His daughter and I submitted a serious complaint about Neil's end of life care in hospital. In Jan 2015, the hospital was found to be neglectful and have subsequently been required to make changes to improve care for other patients though I gather from the Safeguarding people, the Trust has not always been very willing to engage with them, which , of itself is pretty shocking !
Neil's daughter and I had a further meeting with Trust representatives, medical, nursing and management personnel, recently, to chase up what they had undertaken from our initial action plan.
Here's what we have achieved so far :
One of the leading urologists has taken on a role regarding improved end of life care in the department.
There is now a protocol for all staff to be aware of complex cases, mental capacity for treatment, open discussion with patients and families over the value or otherwise of continuing treatment, and safeguarding concerns. Mental Capacity Act training will be mandatory if necessary so there is clarity about how able patients are to make those decisions about continuing treatment.
There has been a recruitment drive for specialist urology nurses and the department is better staffed.
Staffing has had to be reviewed in order that there are adequate trained nurse where there is a demand for them due to patient need even if staff are transferred from other areas temporarily.
Staff have had teaching sessions from one of the Trust's palliative care consultants and Neil's case has been used to highlight failings in the system.
Medical staff rota has been changed to increase availability to patients at night.
A review of patients in the South West with compromised kidney function has indicated that having one uteric stent fitted is just as good as having two, therefore avoiding the stress of a longer procedure.
Ongoing staff training about talking to patients, families about end of life and feasibility of treatments.
Every ward now has a box with pain relief for patients requiring palliative intervention. Staff have been trained to be more confident using syringe drivers.
Flow chart on wards to help staff make decisions about end of life care, when to consult medical staff, etc.,
That's all I can remember to date until I get written copies !
I havn't had my apology from the Trust's Chief Executive yet so have threatened to camp outside her office. I get the feeling unless you put a very strong, assertive case over treatment concerns, they are easily swept under the carpet, luckily, Neil's daughter and I are pretty forceful characters. So, hopefully, we will get better treatment for patients in Neil's predicament but we are not finished yet and may well have to attend further meetings but we are absolutely determined !!
Fiona.