DISABILITIES LIFES IN OTHER PEOPLE HANDS

BOB LANGFORD 21/10/12 Dignity Champions forum

DISABILITIES LIFES IN OTHER
PEOPLE HANDS

One thing about being a disabled person is everyone who outside of our homes thinks they know what is best for you instead of asking the disabled person what they want.
When I had the optician came to see me, I was in the bathroom have a bath I had too get out of the bathroom fast and into lounge to see them, when I get in the lounge. Then optician started too talked about my eyes in front of me instead of asking me. I might as well have stopped in the bath or go to church and get married. Things are not like use to be.
When professional people come to the homes they come with files and a laptop then they put on table. Then they tell the staff how to do their job. There are only 4 people that do know about a disabled person is; disabled person themselves, disabled person's parents, staff at the centre where they is living, staff are doing our individual personal care for 24 hours every day and their support workers. Professional people they think they knew it all but they do not knew it all, when I was at nursing home I had a chest infection they put me on soft food for one day next day I was on normal food cut it up small and I was having thickener in my drinks. I leave there. Now I am showing them how do you eat without chocking or coughing by putting my head forwards. Also when I was there I had a bed sore all the professional people told me that I need a bed rests every day. When I came to Fisher Close I am having a bath every day, Then I had a idea to get new cushion for my chair after I had a advice from a staff at Fisher Close In a month after I had it my sore was getting better after all the exports told me I needed bed rests every day at Derby house. Now I having good laughs about this at Fisher I enjoy it this what life all about.
When I first came to Fisher Close, I had all the professional people came to see me with new equipments and new ideas. In August 2011 I needed new sling so the moving and handling lady came with some slings to try out. She had me on bed for few times. She got me on top of my bed If I moved she would roll out at other side of the bed. It was a new way of moving and handling. Then we had to use the hoist for her to get her up from the floor. On 26th of March 2012 I got my new slings, after I have been waiting since August 2011 for one. Now I can get over the bath without hitting my back side on the bath because I can use the right loops for my shoulders now. When I had my black old sling I was using yellow loops after I have been using the small loops away before then.

Few months later then all change, they leave it to the staff. It is same everywhere you go. When we have a new staff they have a talk about the home as they are walking around. On their first shift the staff are showing the rope and gave them a running Commentary about personal care while they are getting a user up next morning she got somebody else telling her different things. Then they are moving later on instead of stopping for few years then they go. Then next one comes long. Things are not like use to be.
Then I went to the Hub when we get there, there were 3 moving and handling expert we went in a big room with beautiful lifting equipments to showing people how you do it, you put hoist at a angle to stop my feet hitting on the hoist. On 5/10/12 I can not have a bath inside I am dancing.
When they do this in our bathroom at homes the ceiling hoist was broken then we were using the normal hoist in the bathroom. When they put the hoist at a angle they was sitting on top of the washing-basin or on top of the toilet like yellow birds seating in a Banda tree because there is no move in the inn (bathroom) as we not allow to have a shelves on the wall but we can have a cupboard on wall, you only just take the doors off it then you would have 3 shelves on the wall. It is look like Marks & Spencer with our toilet bags and towels in there. Then the staff doing things the old ways after few months I have been to the Hub. The staff was asking each other which end of the table where dose his head go as they was doing at difference ends everyday, every shift is difference I am a puppet on a string, things are not like they use be.
I had to ware my safely belt when I am in side of the bungalow instead of use it for just when I go out in transports or going out in our chairs not in our homes anybody would think we are living on Silverstone race track. Things are not like use to be.

Taking disabled person to doctor he is asking helper what with him instead of asking the Person. Does he eat carrots he not a horse can he understand. Ho dear" I am very sorry we will start again; things are not like use to be.
Taking a resident to see a new home when you walked in they ask you who are you my name is Bob, do you like a cup of tea do you take sugar or milk yes please. Then you ask them lots of questions like do the residents go out every weekend the answer will be yes. Then they take you around the home with the list of questions to be ask, then you have all the questions answered thank you very much I will think about it. When you get there things start to change very slowly like watching a show after few years. Like me when I go in new home I am a good boy until I have been there for few years then I asking for kiss. Then somebody ask me to come to table when there was a chair in the way, I went up to the table and did what I was told, then I had to come out again to move the chair out. When I went to see a new home I could not get in as their was no access to get in and no ramp for the residents to enter the building expect the owner and people with no disabilities. I saw McDonalds he had a farm. On the farm he had hens lay a little egg for me. Thing are not like use to be.
Other day nobody can not find my trousers in my cupboard then broadcast it around the bungalow all day. Next morning shift one of staff they just find them in my cupboard. Inside I am dancing. Things are not like use to be.

You can not run homes without staff just like going fishing without a rod or having a new car without an engine to make it go. Inside I am dancing; things are not like use to be

One of the staff told me to straighten up on the table I did what I was told. Than other members of staff put me on at an angle, inside I am dancing, things are not like use to be.
Like when I went to Derby House in Buxton after I left the Bedford on 6th of November 2006. After I have been there since 12th of February 1972. When I got to Derby House, one of the nurse she use took me out every week for my tea at The Railway pub. She was dancing like Mary Poplins with a big red hat on.i thought it was great that I was going out every week I thought it was part of my care I was enjoying this. Anybody think it was my birthday every week, if I had my birthday every week I would be the oldest person on earth by now. Then all of a sudden she stopped do it after 4 months later.

I had thicker in my drinks in those days they made it so thick that I did not able to get it up the straw I needed a foot pump to get it up I had it on table on my own. Things are not like use to be.
One day I had somebody took me out they had to show me the way to go as I was blind I had a white stick I was Flanagan and Allen under the arches. Inside I am dancing.
One day I was browsing on internet I saw Mickley Hall on the you tube with all people in the activities room doing things. In the video there is a person in garden she is talking about the place how wonderful the place is, we got lots of volunteers come in to help. Everybody got different of stories tell to each other. We have got all different of disabilities. We have a summer fair to got money so that we can on trips out to the seaside. We have bingo nights. When I went there I went in activities room nobody was there to help me to set me up for painting so I went to get a volunteer I did not find one, I looked under the floor boards like Columbo with a brown Mac on. I never went out all the week. I came back home without my things Fisher Close they went back to get them. Those things never on you tube.
I got a welcome back home by everybody gave me a kiss. They lived for ever after.

If I was a career I will do the same things as them. I will be putting the resident in bed wrong way or putting their clothes on upside down like put a resident leg into a shirt arm until somebody told me after I have be on a dressing course when I got my colourfully and wonderful certificate. When I have got somebody is with me then I will do it right. I am going on a art course learn paint to get a beautiful wonderful certificate then I can not do it at home because I can not afford for all my paint equipments. That why people are only humans they are service user's friends not a employees specially when a service user have not got a family or no parents. Things are not like use to be.
If I was care I gave a professional's disable person bath at 68 years of ages and I was doing it different ways everyday how would you act???

Gave me a fishing rod in front of my helmet and a paint brush in back of my helmet with bottle of beer on the ground with a long straw from my mouth to the bottle . Keep clam and count your ladies friends. Things are not like use to be.

You need to work with us for 365 days only then you can understand what is disabilities.

Change the way see disabilities

Thanks

Bob Langford

DIGNITY OF CARE


Post a reply

Rochelle Monte 21/10/12

Bob, this really touched me. We are now expected to work in a person centred way which for some people is not always possible. The optician the doctor some carers may never undersdtand what this means. But you know there are good people out there who do treat others with respect and dignity! Things may not be like they used to be - but hopefully one day soon they can be better x

mike stone 31/10/12

Bob, I think your post was very well thought out and deeply descriptive of the problems you, and doubtless others, experience.

I'm discussing a different thing with someone at the Department of Health - can I have your permission to cut out your piece and paste in into an e-mail to her, with a request that she pass it on to whoever at the DH covers that aspect of care ?

Best wishes, Mike Stone

BOB LANGFORD 31/10/12

Hi Mike

Ok to use my story

Every homes is the same not just one where you are living.
The high standards people they never comes around our homes to check them
and look at report books to see what is going on.

They keep sending us a questionnaires to fill in.

bob


mike stone 01/11/12

Thank you Bob,

I would like your piece to be displayed on walls all over the place !

Would 'Inside I am dancing' be the right title, if it does (I doubt it will, but one can only hope) become something that is spread about and reproduced ?

It is a very poweful, and 'insightful for others', piece of writing !

Regards, Mike

mike stone 07/12/12

Bob,

I am surprised, checking back, that your piece has not attracted more comments - as I said, I myself find it very powerful.

mike stone 08/01/18

I'm commenting to move this piece to the front of the discussions listing - I want to point a teacher, who asked a question on Dignity in Action Facebook, at Bob's wonderful piece!

Liz Taylor 26/01/18

Yes totally agree that Bob has written very movingly about his experiences, it certainly offers case study material for training events and for helping people think about things in a very different way. Thank you Bob for taking the time and energy to write, if I may I would like to include you story in a case studies section of the resources [for training] file we are currently putting together for the website.

chianta williams 26/01/18

Bob unfortunately you are so right . I have cared for many people over the years with disabilities and even Now when assisting with shopping , shop assistants will talk to me instead of whom I'm assisting . It's rude but also think it's a lack of understanding. Glad people just like you make them stand up and think ,perhaps you Could do seminars for those who lack understanding telling them how it feels for you living with a disability , about understanding person centred planning and the importance of all care staff actually reading it so that everyone delivers it in the same way ,everyday how you want it to be done. Dislike places that don't do enough to occupy people, ie trips out or activities to do in house ,makes their day so long and boring .Take care and hope things improve.


Roxana Moldovan 27/01/18

Hi Bob, i am disappointed thqt all the above happened in a care environment. Things changed, people changed, practice changed. Or at least we hope so. In regards to the professionals, is still a lot to work. I work in a profound learning disability care home, and GP and other professionals still have no clue about Person Centred care and also MCA. I hope you are well.

mike stone 19/02/22

I was thinking of this piece by Bob Langford, when a couple of weeks ago someone asked me a question. I'm not sure if I actually understood what the question was - I think it was about 'how 'organisational processes' can [often unintentionally] have 'bad effects' on the people the organisations are serving' (to use my clumsy phrase!).

Anyway, I was asked the question by someone with a background in social work/care, and I am going to point her at this piece by Bob, for her view. As I really did like this piece - it 'really me think/understand' when I first read it - I've decided to post, so that any Dignity in Care readers who haven't seen it, might cast their eyes over it.

Rosalie Smith 19/02/22

Hello Mike,
I have only just read the piece by Bob, likewise it made me think, even where my mum is in extra care housing and has care staff in, the person centered care plan is not read,I frequently have to remind the staff of "read the care plan".
Unfortunate would appear managers are to busy with paper work to go and observe peoples work.

Rosalie Smith 19/02/22

Hello Bob,

I have only just read your piece, and found it very moving. unfortunate now we are in 2022, person center care plans are written up and frequently not followed. I have found this with my mum care plan. It would appear care plans are not really followed up on a regular time scale.
People who have someone to question this are lucky but many do not so who is checking up on "What goes on behind close doors".
More observations and checks need to be in place on these person center care plans??

mike stone 22/02/22

Hi Rosalie,

I suspect you might be correct about 'person centred care plans', and how they will usually be created, but not necessarily implemented well by very-busy care staff.

'Better Process' only works, if the people involved in putting things into action, have got the time to do that properly. I suspect, many care staff simply don't have enough time, to do what we would like done?

Currently, I have got a issue re my own concerns, with the way that 'advance care planning' seems to be being pushed-forward as a kind of 'universal panacea' - see my comment in:

https://spcare.bmj.com/content/early/2022/01/31/bmjspcare-2021-003498.responses#%E2%80%98future-care-planning%E2%80%99---perhaps-the-way-forward

As for more checks to be put in place, to ensure that the care plans are being put into action: I've got mixed views. As soon as 'audit' comes to the fore, there seems to be a danger of 'working to whatever is audited' - of concentrating not on the actual needs of the person, but instead of 'working to meet the 'audit target''. That issue is tricky, I think.

Often, the problem seems to be that we are trying to get too much out of an under-resourced system, when I look at problems in health and social care?

Jan Charles 10/03/22

Gosh where do I start. Thank you Bob Rosalie and Mike
I have a slight mobility disability and I aim to keep going for a long as possible,
Never mind the care environments, lets start with society and the barriers to independence that exist. When people become aware of these for first line awareness then hopefully other levels of awareness may follow. Supermarket trollies are a great help to me, but the height of shelves is a barrier to independent shopping
We would love to walk on flat footpaths only to be prevented from going forward due to high styles and chained gates. Maintaining mobility saves the NHS money and benefits the user by often improving their quality of life
But Bob I am a nurse and patient but not within the care sector that you mention but when in hospital I do sometimes feel invisible
May all that is good be with you for your courage in sharing.xx Jan

mike stone 25/03/22

Hi Jan,

I think you make an excellent point about 'the barriers'. It a person who is 'facing barriers' who is best-placed to see those barriers. So we all need to keep remembering that!