Post by Silly Yak on Jan 14, 2011 10:09:12 GMT
I had been waiting for nine months to be called into hospital for further tests in an attempt to find out what is causing diarrhoea and pain. The 'attacks' last for up to three hours. Several of the wards have been closed due to the Noro Virus. Last Wednesday lunchtime, the gastro's secretary phoned to say they had a bed for me and could I get to the hospital within the next two hours. (The gastro's secretary tried very hard over a long period to find me a bed, keeping in touch with me on a regular basis by phone). I dropped everything and got there, obviously thankful for the opportunity.
That evening I had no choice from the menu and cod in parsley sauce was put in front of me. Fortunately, I like fish. The following morning the breakfast trolley arrived. There was nothing GF to eat. We were offered Kellog's cereals which I declined as they aren't GF. I was given tinned pears. There were two other Coeliacs in the ward which held six people. There was no GF bread.
At this point, I decided to phone PALS. They were on the case immediately and the Catering Manager arrived on the ward within the hour. We discussed the situation with her and she assured us they could and would cater for us Coeliacs.
From this point on, we had no menu choice list the day before. Fish was often offered, the other Coeliacs didn't like fish and we were also offered jacket potatoes.
Yesterday morning the breakfast trolley arrived. I was asked if I wanted breakfast. I asked for GF toast. They told me the bread had been used up the day before and that they would get some for the next day. The trolley was moved on to the next patient. I wasn't even offered fruit. So, no breakfast. (You wouldn't treat a monkey at the zoo like this).
I felt rather 'low' before going into hospital due to the regular 'attacks' and this food situation really wasn't helping.
I then walked to the hospital restaurant feeling tearful and had some beans and bacon. (This wasn't the first time). Not possible if one is elderly, demented or similar.
Lunchtime I was offered a roast. I asked for GF gravy and was told the kitchen hadn't sent any up. So I asked if it was possible for them to go get it. They said it was too far away. Again, I walked to the restaurant and just had a cuppa. Again, I was feeling tearful. I returned to the ward and was told the hospital now uses a gravy that is suitable for all. I asked them to hold the meal for the evening. The sister said they aren't allowed to do this so I suggested I put it in the microwave! Anyway, evening arrived and they wouldn't let me do this due to insurance purposes.
During my stay I had to provide samples in the paper mache pots. They were testing for several things, one of which was parasites due to the fact that I travel abroad on a regular basis. When I 'performed', I would leave it covered on the floor in the bathroom, as told, and go tell the nurse. On more than one occasion, the samples were left there for almost four hours. It was disgusting, let alone extremely embarrassing for me.
Other unfortunate incidences happened - one of which was witnessing a patient opposite me 'fitting' on three occasions. On these occasions I ran for the nurse. On the last occasion, the nurse whispered to me that the patient pretends to be 'fitting'. Well, thanks nurse for not telling me sooner!
Last night, following the meal fiasco, I had had enough, gathered my belongings and walked out. The nurse tried to get me to stay. She said there is always one choice for a GF meal at night, to which I replied that that in itself is not a "choice".
After arriving home, I received a text from the Coeliac patient that was in the next bed to me, saying the ward had been closed since I left due to the Noro Virus.
I am going to write to PALS. If it helps other future Coeliac patients then that would be something.
My next move is to phone the gastro's secretary today, make a private appointment to see him and hopefully get the results of my tests.
What do you think folks? I would appreciate your thoughts and suggestions. ....
******************
From Eileen:
One of the Coeliac patients had, I suspect, Annorexia. She had previously been in a coma. She was taken into hospital to be 'fed up'. She wasn't even allowed to walk to the toilet alone. Because there was no breakfast, she tucked into Kellog's cornflakes on a few occasions. The fact that this girl was in to be 'fed up', (she weighed slightly over 4 stone), and there was little GF food for her, is absolutely disgusting and there is no excuse whatsoever on the hospital's part.
*********************
Posted by Eileen (Bristol) on 23/3/2010
GF board
Following on from my message as posted here yesterday, I sent a link to same to the Nursing, Safety and Patient Care Standards Directorate and received a reply this morning, as follows:-
"Thank you for your email, firstly may I say I am very sorry that you had such a poor experience whilst a patient on Ward 206, clearly this is not acceptable and I will of course ensure that the issues you have raised are investigated.
Once again I am very sorry that you have had this experience, and I thank you for taking the time and trouble of letting us know so that we can learn lessons for our future patients.
It would be very helpful if you could forward details of your address and date of birth, this will enable the Trust to be able to respond to you by letter.
Thank you for your help in this matter.
Sue Needs
Deputy Advice and Complaints Team Manager
Nursing, Safety and Patient Care Standards Directorate
North Bristol NHS Trust"
*********************
Re: Hospital action group
Posted by Anon on 25/3/2010, 21:12:55,
in reply to
{Cassie‘s}"Hospital action group" message on GF board
Having worked in the NHS for many years more recently in a fairly senior role, I can assure you that a heavyweight approach is not usually the most effective. Letters to the media, MPs etc are not always as effective as you might think.
I've done some work with a number of catering managers, many who while they didn't understand the importance of a gluten free diet, were very interested and keen to understand once I spoke to them about it. I've seen some very good examples of practice such as this one:
www.cuh.org.uk/resources/pdf/pat ... tering.pdf
Its a great idea what you are doing and I fully support it, but you may need to take a more measured approach rather than all guns ablazing if you want success.
Writing to the media - usually ineffective, might be difficult to get them interested and soon forgotten once its been printed.
Writing to MP - In my experience, you write to the MP, he/she writes to the Chief Executive and then it gets processed in exectly the same way as a complaint.
Write to multiple people in the Trust - Will all just get merged together and you'll get one standard response.
Would suggest the following:
Speak to your Local Involvement Network asking them to investegate catering for special needs in hospital. As they are in their infancy many are looking for projects to tackle.
Write to the catering manager. Will usually be very keen to learn especially if you offer to help and advise. You don't know what you don't know, and many of them seriously do not know, and want to learn.
Write to one of the Non Executive Directors and ask them to take the cause up on your behalf.
Write to the equality and diversity manager and say that you feel coeliacs are being discriminated against in your local trust and that you would like action taken.
Would support fully a well constructed complaint letter if you have experienced poor catering, and complaints are treated with seriousness by most NHS organisations, especially if done in a calm and constructive manner. Write directly to the CEO or the complaints manager - doesn't matter as it will get past to the complaints manager to deal with anyway. Use ICAS to support your complaint.
Complaints Departments are now tending to deal with concerns, comments, complaints, compliments now so hence the reason why there is a change in terminology and PALS are starting to disappear. If you don't want to make a complaint, you can just feedback about your concerns in this way.
If your local trust is a foundation trust, become a member, get involved and ask the board of governors to look at this issue. …
***************
Re: Hospital action group
Posted by Eileen (Bristol) on 24/3/2010, 22:09:22, in reply to "Hospital action group"
Hi Cassie
I really appreciate your post this evening! I am with you all the way.
1. When I was in the hospital last week for five days, others that were on a normal diet were given three choices for lunch and dinner.
2. Coeliacs had no choice. Just one meal was offered. (The quality was awful).
3. I feel this is discriminatory.
4. I suggest we push for a Gluten Free Meal Choice Sheet for lunch and dinner in the hospitals.
5. The Government are constantly trying to encourage us all to eat the "Five a Day". Why does this not happen when in hospital, especially when we need it most, Coeliac or not?!
6. On the second day of my stay in hospital, after I phoned PALS, the dietician visited the ward to see a patient, (I would suspect the patient is Annorexic but she was a Coeliac too). The dietician left three of us Coeliacs with a packet of biscuits and crackers each. Was it too difficult for the dietician to ensure the kitchen could cater for us and at least provide GF toast for breakfast?
7. In my opinion, we need to target the dieticians in the hospitals. They should be kicking butt and looking out for us.
************
Re: Hospital action group
Posted by anne (wales) on 24/3/2010, 20:22:58, in reply to "Hospital action group"
my local hospital provides very good gf food on the wards but nothing in the canteen for anyone who`s there for a appointment
…there was no menu so no choice of gf meal i was lucky i liked what was on offer but again must say it was very good food
******************************
Re: FAO Cassie M.
Posted by Jan (Roth) on 24/3/2010
GF board
I'm with you all the way. I had awful experience of hospital food (or lack of it) when I stayed in for 4 days in August last year. I wrote to complain but never received a response.
That evening I had no choice from the menu and cod in parsley sauce was put in front of me. Fortunately, I like fish. The following morning the breakfast trolley arrived. There was nothing GF to eat. We were offered Kellog's cereals which I declined as they aren't GF. I was given tinned pears. There were two other Coeliacs in the ward which held six people. There was no GF bread.
At this point, I decided to phone PALS. They were on the case immediately and the Catering Manager arrived on the ward within the hour. We discussed the situation with her and she assured us they could and would cater for us Coeliacs.
From this point on, we had no menu choice list the day before. Fish was often offered, the other Coeliacs didn't like fish and we were also offered jacket potatoes.
Yesterday morning the breakfast trolley arrived. I was asked if I wanted breakfast. I asked for GF toast. They told me the bread had been used up the day before and that they would get some for the next day. The trolley was moved on to the next patient. I wasn't even offered fruit. So, no breakfast. (You wouldn't treat a monkey at the zoo like this).
I felt rather 'low' before going into hospital due to the regular 'attacks' and this food situation really wasn't helping.
I then walked to the hospital restaurant feeling tearful and had some beans and bacon. (This wasn't the first time). Not possible if one is elderly, demented or similar.
Lunchtime I was offered a roast. I asked for GF gravy and was told the kitchen hadn't sent any up. So I asked if it was possible for them to go get it. They said it was too far away. Again, I walked to the restaurant and just had a cuppa. Again, I was feeling tearful. I returned to the ward and was told the hospital now uses a gravy that is suitable for all. I asked them to hold the meal for the evening. The sister said they aren't allowed to do this so I suggested I put it in the microwave! Anyway, evening arrived and they wouldn't let me do this due to insurance purposes.
During my stay I had to provide samples in the paper mache pots. They were testing for several things, one of which was parasites due to the fact that I travel abroad on a regular basis. When I 'performed', I would leave it covered on the floor in the bathroom, as told, and go tell the nurse. On more than one occasion, the samples were left there for almost four hours. It was disgusting, let alone extremely embarrassing for me.
Other unfortunate incidences happened - one of which was witnessing a patient opposite me 'fitting' on three occasions. On these occasions I ran for the nurse. On the last occasion, the nurse whispered to me that the patient pretends to be 'fitting'. Well, thanks nurse for not telling me sooner!
Last night, following the meal fiasco, I had had enough, gathered my belongings and walked out. The nurse tried to get me to stay. She said there is always one choice for a GF meal at night, to which I replied that that in itself is not a "choice".
After arriving home, I received a text from the Coeliac patient that was in the next bed to me, saying the ward had been closed since I left due to the Noro Virus.
I am going to write to PALS. If it helps other future Coeliac patients then that would be something.
My next move is to phone the gastro's secretary today, make a private appointment to see him and hopefully get the results of my tests.
What do you think folks? I would appreciate your thoughts and suggestions. ....
******************
From Eileen:
One of the Coeliac patients had, I suspect, Annorexia. She had previously been in a coma. She was taken into hospital to be 'fed up'. She wasn't even allowed to walk to the toilet alone. Because there was no breakfast, she tucked into Kellog's cornflakes on a few occasions. The fact that this girl was in to be 'fed up', (she weighed slightly over 4 stone), and there was little GF food for her, is absolutely disgusting and there is no excuse whatsoever on the hospital's part.
*********************
Posted by Eileen (Bristol) on 23/3/2010
GF board
Following on from my message as posted here yesterday, I sent a link to same to the Nursing, Safety and Patient Care Standards Directorate and received a reply this morning, as follows:-
"Thank you for your email, firstly may I say I am very sorry that you had such a poor experience whilst a patient on Ward 206, clearly this is not acceptable and I will of course ensure that the issues you have raised are investigated.
Once again I am very sorry that you have had this experience, and I thank you for taking the time and trouble of letting us know so that we can learn lessons for our future patients.
It would be very helpful if you could forward details of your address and date of birth, this will enable the Trust to be able to respond to you by letter.
Thank you for your help in this matter.
Sue Needs
Deputy Advice and Complaints Team Manager
Nursing, Safety and Patient Care Standards Directorate
North Bristol NHS Trust"
*********************
Re: Hospital action group
Posted by Anon on 25/3/2010, 21:12:55,
in reply to
{Cassie‘s}"Hospital action group" message on GF board
Having worked in the NHS for many years more recently in a fairly senior role, I can assure you that a heavyweight approach is not usually the most effective. Letters to the media, MPs etc are not always as effective as you might think.
I've done some work with a number of catering managers, many who while they didn't understand the importance of a gluten free diet, were very interested and keen to understand once I spoke to them about it. I've seen some very good examples of practice such as this one:
www.cuh.org.uk/resources/pdf/pat ... tering.pdf
Its a great idea what you are doing and I fully support it, but you may need to take a more measured approach rather than all guns ablazing if you want success.
Writing to the media - usually ineffective, might be difficult to get them interested and soon forgotten once its been printed.
Writing to MP - In my experience, you write to the MP, he/she writes to the Chief Executive and then it gets processed in exectly the same way as a complaint.
Write to multiple people in the Trust - Will all just get merged together and you'll get one standard response.
Would suggest the following:
Speak to your Local Involvement Network asking them to investegate catering for special needs in hospital. As they are in their infancy many are looking for projects to tackle.
Write to the catering manager. Will usually be very keen to learn especially if you offer to help and advise. You don't know what you don't know, and many of them seriously do not know, and want to learn.
Write to one of the Non Executive Directors and ask them to take the cause up on your behalf.
Write to the equality and diversity manager and say that you feel coeliacs are being discriminated against in your local trust and that you would like action taken.
Would support fully a well constructed complaint letter if you have experienced poor catering, and complaints are treated with seriousness by most NHS organisations, especially if done in a calm and constructive manner. Write directly to the CEO or the complaints manager - doesn't matter as it will get past to the complaints manager to deal with anyway. Use ICAS to support your complaint.
Complaints Departments are now tending to deal with concerns, comments, complaints, compliments now so hence the reason why there is a change in terminology and PALS are starting to disappear. If you don't want to make a complaint, you can just feedback about your concerns in this way.
If your local trust is a foundation trust, become a member, get involved and ask the board of governors to look at this issue. …
***************
Re: Hospital action group
Posted by Eileen (Bristol) on 24/3/2010, 22:09:22, in reply to "Hospital action group"
Hi Cassie
I really appreciate your post this evening! I am with you all the way.
1. When I was in the hospital last week for five days, others that were on a normal diet were given three choices for lunch and dinner.
2. Coeliacs had no choice. Just one meal was offered. (The quality was awful).
3. I feel this is discriminatory.
4. I suggest we push for a Gluten Free Meal Choice Sheet for lunch and dinner in the hospitals.
5. The Government are constantly trying to encourage us all to eat the "Five a Day". Why does this not happen when in hospital, especially when we need it most, Coeliac or not?!
6. On the second day of my stay in hospital, after I phoned PALS, the dietician visited the ward to see a patient, (I would suspect the patient is Annorexic but she was a Coeliac too). The dietician left three of us Coeliacs with a packet of biscuits and crackers each. Was it too difficult for the dietician to ensure the kitchen could cater for us and at least provide GF toast for breakfast?
7. In my opinion, we need to target the dieticians in the hospitals. They should be kicking butt and looking out for us.
************
Re: Hospital action group
Posted by anne (wales) on 24/3/2010, 20:22:58, in reply to "Hospital action group"
my local hospital provides very good gf food on the wards but nothing in the canteen for anyone who`s there for a appointment
…there was no menu so no choice of gf meal i was lucky i liked what was on offer but again must say it was very good food
******************************
Re: FAO Cassie M.
Posted by Jan (Roth) on 24/3/2010
GF board
I'm with you all the way. I had awful experience of hospital food (or lack of it) when I stayed in for 4 days in August last year. I wrote to complain but never received a response.
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