"My sister's experience of the liverpool care pathway"

About: Airedale General Hospital / Older people's healthcare

(as a relative),

Earlier this year, my sister was admitted to an Ward 5 with a stroke and she was not given a clot buster as part of her treatment. Approx 3 weeks later, the relatives were offered the opportunity to remove all her treatments including hydration and nutrition. At this stage, they refused the offer. She was not offered speech therapy nor physiotherapy - not even for her affected arm which was becoming very contracted. In late May, a progress meeting was held where it was decided, in my view illegally, that her treatment should be stopped. However, because I queried the legality of this, they checked the Mental Capacity Act and found that it was illegal. In spite of this, the consultant said they would not give her any antibiotics, should she need them. I wrote to the medical director, the chief executive and the consultant requesting a meeting, which they ignored.

Instead soon after, they transferred her to a local Nursing Home where, in my opinion, she was illegally put on the Liverpool Care Pathway. She was not dying and the relatives were not informed until after she was put on the LCP - we were not informed until after she died 15 days later. I feel we were lied to and deceived by the nurses and the medical staff and especially by the doctor I spoke to after my sister's death. I believe she tried to fudge the course of events and muddy the waters by eternally quoting the importance of her "professional Judgement".

I am finding it incredibly difficult to come to terms with the loss of my sister but importantly that she died alone, because we were not told that she was put on the LCP. I believe the senior staff at the hospital and all the people who I feel deliberately deceived us at the Nursing Home should be ashamed of their lack of professionalism.

My sister was in Airedale Hospital for almost 4 months. She did not have her nails cut and they were long and thick. When I asked if it was possible to cut her nails, I was told by a care assistant that they had to go on a course to learn how to cut nails and anyway they didn't have time. When I next visited her nails were cut but only on one hand and not her toe nails. Her mouth was in a disgraceful state with huge white spots, I wondered whether this was thrush. I cleaned her mouth when I could, but it was very sore. On the positive side, some of the nurses were lovely and the ward sister was also very supportive, albeit reticent about my sister's care plan.

In my opinion, PALS was positively useless, as were most of the agencies who purport to be on the patients side. I did not receive any help or useful advice. It is a shambles. This is a short version of what has been a complete nightmare.

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Responses

Response from Stroke Association

03/01/13

Our Ref: 154170

Dear Carme Miranda

I was so sorry to hear that your sister passed away following a stroke earlier this year. Please accept my sincere condolences for your loss. It sounds like you have been through a very distressing time and it’s perfectly understandable that you are finding it difficult to come to terms with the loss of your sister. If you would like to talk to someone about this you are welcome to call the Stroke Associations Stroke Helpline – we are not trained counsellors but we are here to listen and provide emotional support. The Stroke Helpline is open Monday to Friday from 9am to 5pm on 0303 30 33 100. I have also provided below a link to our factsheet on bereavement after stroke which I hope you find helpful as it has contact details for other organisations which may be able to offer you support during this difficult time.

Bereavement and stroke

http://www.stroke.org.uk/sites/default/files/Bereavement%20and%20stroke.pdf

If you have any questions about stroke or would like to discuss anything further, please do not hesitate to contact us. As mentioned previously, we are open Monday to Friday from 9am to 5pm on 0303 30 33 100.

Yours sincerely

Sandi Muckle

Stroke Information Service

info@stroke.org.uk

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Response from Karen Dunwoodie, Patient Experience Lead, Airedale NHS Foundation Trust

Condolences go to Carme Miranda on the loss of her Sister and for the distress suffered during the period of her Sister’s illness.

Airedale NHS Foundation Trust has not had any individual contact from Carme Miranda but would welcome being able to discuss the issues outlined and we encourage Carme Miranda to contact our complaints department.

Telephone: 01535 294015 or e mail: PALS.Office@anhst.nhs.uk

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