Neglect for Free on the NHS November 1, 2007
Mum moved into the home today. It all went well apparently, and I am so relieved that at last she has her dignity back. I couldn’t be there to help her get moved in (the joy of a full-time job) but I shall visit on Saturday. For the first time in a long time I am not as worried about the impending visit.
The initial assessment undertaken by the staff at the home was an interesting one, and I am keen to see if their observations are accurate. If they are, many questions will need to be asked about the NHS definition of “care”.
On the 19th October, Mum weighed 7 stone. Her weight now is 6 stone. Her new carers are very concerned about this above all else. On Sunday evening this week, she was declared Nil by Mouth as my previous posts explained. However, my step-father was not to be put off by this and he managed to force some fluids into her this week albeit slowly and with great difficulty. The whole problem was of course the issue of her swallowing.
The nurses today declared that she is able to swallow and indeed managed to feed her a whole meal this lunch time. Not a nasty mush of sticky, gloopy and revolting chick-pea concoction, but real-life vegetables and meat, pureed, and separated into portions so they tasted nice. She even finished off with bananas for dessert. Maybe she ate this food because it tasted a lot better, or maybe she ate this food because someone properly trained actually took the time to feed her.
And here I have to think about the implications of this.
I am presuming she has lost weight for one of 2 reasons:
1) her body is no longer metabolising anything she eats and therefore she cannot take any goodness from the food
2) she was not being fed except for the lunch time session where my step-father fed her.
The care home’s priority is to help her put weight back on, for her bones are in danger of breaking if she falls because of the lack of any natural padding. Now, if she does start putting weight back on this can only mean that she was being severely neglected by the NHS. If she doesn’t, then it’s nobody’s fault and thus it is the natural progress of the disease and her body is indeed shutting down. Like any good scientist, all I can do is observe and see what happens now she is to be fed 3 meals a day, assuming they are right about her ability to swallow.
The care home are very concerned about the pressure areas on mum’s body, being that her bones are protruding and sticking out, her comfort being a big issue for her palliative care. There are areas on her body that have become very sore and broken due to her being in bed and sitting in the chair for too many hours at a time. She now has a very comfortable air bed in her room which will be rather better than a series of mattresses on a cold hard floor. Could the NHS not have acquired an air bed? Surely the risk of pressure sores are very routine in their line of work?
The accusation of neglect is a big one, and one I shall be pursuing in the complaints procedure of the hospital (in addition to writing to my MP and a letter to the Guardian methinks). There is much evidence in this series of posts alone to suggest she has been neglected. If the feeding causes a weight increase, she need never have experienced this with the NHS. Had she been moved into a home 6 weeks ago, she might not have been allowed to be effectively starved. Time will tell, although how much time we have is the big unknown.
As for the letter of complaint, I really don’t have a clue where to start.
Begin at the top and work your way down. You might want to consider, in this order,
Your MP, your mum’s MP, and the MP in whose constituency the hospital is based. Public servants can afford to ignore most letters of complaint, but they drop everything to respond to an MP’s letter asking for further information. Just write out exactly what happened, as you have done on your blog, and include your feelings and your mum and step-dad’s feelings. A photograph is so powerful, so if you felt you wanted to, include one.
Then you may wish to write to the health secretary and ask him (Rt Hon Alan Johnson MP) to deal with this as a matter of urgency. Of course, you will tell him that you have already written to the various MPs.
Now focus on the hospital itself. That means writing the same letter to the chief executive, the medical director, the director of nursing and the chairman of the hospital trust board. All these people can be located by googling the name of the hospital followed by “board members.” No doubt the non-executive directors will be local/county council politicians. Ask that they ensure they comply with all applicable timescales relevant to your letter. Critically, include a little paragraph in which you ask to see copies of all risk assessments re nutrition, feeding, tissue viability and the risk assessment of the impact of these decisions on your mum’s Human Rights, asking if they intend for the matters you raise to be discussed by the governance committee.
You might find unexpected support by contacting the local papers and asking if they have a website you can search to see if this is the first time such dreadful care has been provided by the hospital. This might set the hare running though.
Finally, a letter of complaint (based on the previous letters to MPs etc) to the commission for social care and health can work miracles. http://www.csci.org.uk/about_us/contact_us/head_office_contacts_details.aspx
http://www.csci.org.uk/
Don’t waste time writing to the Lincolnshire office; instead address your letter to Dame Denise Platt, Chair of the Commission for Social Care Inspection. As with an MP’s letter, a letter bounced down the chain from her in-tray often makes workers sit up and do something.
And finally, you have achieved what you set out to do, which is to secure safe, effective and dignified services for your mum. Well done, you have truly moved mountains.
amalee