The role of Advocacy in ensuring dignity.

1. The role of Advocacy in ensuring dignity. Elssa Wheeler- IMCA Operations Manager Advocacy Matters Ltd Charity No: 1148198 Company No: 07987156 Tel: 0121 321 2377

2. PUTTING PEOPLE FIRST The advocacy scheme will ensure that the wishes and interests of the people they advocate for direct advocates’ work. Advocates should be non-judgmental and respectful of peoples' needs, views and experiences. Advocates will ensure that information concerning the people they advocate for is shared with these individuals. What is Advocacy INDEPENDENCE structurally independent from statutory organisations service provider agencies. The advocacy scheme will be as free from conflict of interest as possible "ADVOCACY IS TAKING ACTION TO HELP PEOPLE SAY WHAT THEY WANT, SECURE THEIR RIGHTS, REPRESENT THEIR INTERESTS AND OBTAIN SERVICES THEY NEED. ADVOCATES AND ADVOCACY SCHEMES WORK IN PARTNERSHIP WITH THE PEOPLE THEY SUPPORT AND TAKE THEIR SIDE. ADVOCACY PROMOTES SOCIAL INCLUSION, EQUALITY AND SOCIAL JUSTICE" EMPOWERMENT The advocacy scheme will support self-advocacy and empowerment through its work. ACCESSIBILITY Advocacy will be provided free of charge to eligible people. EQUAL OPPORTUNITY Recognises the need to be proactive in tackling all forms of inequality, discrimination and social exclusion CONFIDENTIALITY information known about a person using the scheme is confidential to the scheme and any circumstances under which confidentiality might be breached will be in policy COMPLAINTS The scheme will enable people who use its services to access external independent support to make or pursue Action for Advocacy

3. Non Instructed Advocacy: Human Rights based approach ‘You could think about my rights (which are the same as yours!) and make sure I get what I am entitled to, that I’m safe and that my rights as a citizen and user of health and social care services are upheld. If you think something is happening in my life which breaks a law or infringes my rights you may need to get legal advice or representation’. Andy Bradley Action for Advocacy 2008

4. Non Instructed Advocacy: The Watching Brief You could think about the quality of my life and think about how changes or decisions about my life will affect me. You can ask questions of powerful people who are making decisions about me to make them really think about the decision from my point of view – this keeps me at the centre of the decision. Andy Bradley Action for Advocacy 2008 Brief developed by Assist Staffordshire

5. The eight domains to a quality life

6. The eight domains to a quality life

7. Dressed in others clothes, not always the right gender. Dignity Issues? Not allowed a sexual relationship with a partner Talked about as if not there in a derogatory manner Dirty soiled clothes Death in hospital Left with food on face or clothes after feeding. No bath wash or shower Women left with facial hair Inadequate Personal Care Left in distress when needing assistance with toileting etc, requests ignored. Hair left un brushed and untidy. No visits to hair dressers/ barbers when this is important to the person Placed in incontinence pads when not in continent for the ease of others. Food and drink left out of reach Belongings not valued or seen as important- photo’s etc No meaningful activity Given food that is disliked or does not reach an individuals cultural/ religious needs No individuality, becoming objectified No access to finances, no appointee/ deputy. Cannot buy toiletries, clothes engage in activity. Not given time to eat, rushed. Shared rooms, no privacy Never going out of the care home or residential.

8. Barriers? Coercion Lack of culturally sensitive support Funding Post Code Lottery- no older adults advocacy Language barriers Staffing issues Venues Lack of privacy- no where confidential to speak Family disputes Attitudes Internal politics Lack of knowledge about the role of an advocate Fear of sharing information or lack of knowledge on when to share

9. Advocacy Story Arthur a gentleman in his 80’s who had become aphasic following a stroke and been in a stroke rehab unit for some months.  Arthur was physically mobile; he had been assessed to lack capacity for deciding where he should live on discharge from hospital.  Prior to admission he lived in his own home with his wife and had adult children all living away from home. Whilst attending a Multi-Disciplinary Team Meeting one of the professionals involved (Staff Nurse level) voiced her personal knowledge of Arthur as she stated one of her children had been at school with his child and that Arthur was “not a very nice person” and that he was not well liked by his children and had not treated them well.  She also made a further comment with the implication that due to this fact he did not ‘deserve’ to be funded by the NHS nor to get Continuing Health Care funding (which was under discussion). I wrote to the CHC Manager requesting that an Assessor was appointed who was independent of the Hospital this gentlemen was placed in and had no working relationship with any of the staff there. 

10. Advocacy Story Frank described how on the night of an operation he was crying out in pain all night but “no one came” and how this had “suddenly changed” the next morning but he couldn’t understand why.  He had then overheard one of the nursing staff say “This man has been extremely ill and needs to be taken care of”.  Apparently both of his nephrostomy bags burst or leaked that night.  Frank told me the next day that he had called over one of the nursing staff when he felt something wet which he described as “blood and urine” mixed together.  He told me the Nurse came up to him and said harshly “Oh what have you done?  You’ve pulled them off – why have you done that?!”.  He said she then went off and left him for a long time and no one came.  I placed a complaint into the NHS the CEO of this Hospital about Frank’s treatment and the lack of dignity afforded him. However this was only after he was discharged as he was scared of being treated badly by the ward staff if they knew he had complained about them.

11. Advocacy Story • Brian is a man in his late 70’s who had inoperable bowel cancer. I reported an incident that Brian had told me whereby he urgently needed to open his bowels. He called out repeatedly for help he said and no one came (which he has reported has happened on a number of occasions) and finally had no choice but to resort to doing it in a tissue at the side of the bed.  He then had to keep calling till a nurse finally came and said (something to the effect of) “Ugh what have you done now” before putting on gloves to remove the tissue and contents. • A Best Interest decision was taken by that Consultant for Brian to have no further treatment, which had also been his stated wish.  However, without warning or consultation with myself or his wife, I arrived at the Hospital a few days later to find that a new Consultant (who we had no prior contact) had apparently overruled this decision and ‘persuaded’ Brian to have further procedures.  • Brian is now lying in a hospital bed virtually unable to do anything for himself, his dignity is in shreds and he faces and long, prolonged and uncomfortable death which – I feel – is the result of all the unnecessary cascade of interventions he has been made subject to which when he was able to state he did not want. 

12. IMCA Story Mr. X Case:  Accommodation decision for client in Hospital with no home to be discharged to, Social Worker had commented on how client was ‘obsessed’ with getting access to money or belongings and therefore ‘refused’ to discuss anything else: Mr X was very concerned when meeting the IMCA at the fact he had no money and no possessions – and was very worried about how he was going to get any.  It may be quite understandable that he would be preoccupied with this when meeting anyone that he thinks may be able to help him sort this concern out.  Mr X does need to be provided with items of clothing such as trousers, shirt, socks, slippers, underwear etc and any toiletries that are not normally provided such as soap, toothbrush etc as his Dignity is seriously compromised by a lack of these and without the means to purchase them.  Also – he needs to be provided with practical assistance and advice as to how he can sort out his financial situation either with accessing his money or processing a benefits claim.

13. IMCA Story Mr. Y Case:  Accommodation decision for elderly client with dementia in intermediate care regarding whether he should return home or go to placement: There is note in the Care Plan regarding the Deprivation of Liberty authorisation for Mr Y “Under DOLS staff can remove Mr Y’s mobile phone from him if it is felt the callers are causing distress to him.  This needs to be documented in his notes as to the reasoning for this”.  However, a subsequent entry in the file notes the next day states “Prompted Mr Y to give his phone to me, I explained it was important to turn phone off, because I had great concern that his phone was not working correctly, Mr Y handed the mobile phone over without any problems.  Both phone and charger in the safe for security”.  This does not appear to accord with the documented condition under which Mr Y’s phone can be removed.  There is no documented reason regarding an incident of callers causing distress to Mr Y.  There is no documented note of a telephone call being received by Mr Y and leading to the removal of his phone. 

14. IMCA Story Mr. Y Cont.. The power to remove his phone under certain, specifically stated circumstances should not be taken as an automatic right to do so with no stated reason.  There also appears to have been no true explanation given to Mr Y with regards to its removal.  Mr Y’s dignity and his right to be given a full and truthful explanation of what is happening to him and why should be at the centre of all actions taken.  If Mr Y’s phone is removed (with good reason) then in addition to the reasons behind its removal being fully documented it would be good practice to set a date to review this action and consider returning it to him.  If Mr Y asks where his phone is he should also be given a true explanation of its whereabouts and the reason for this. 

15. IMCA Story Mrs. K Case:  Accommodation decision for elderly lady with dementia moving from own home to potential placement and currently in Hospital. Mrs K should be placed in accommodation that is of a no lesser standard than her own home that she has been accustomed to living in – including considerations such as the standard of décor, cleanliness and environment, furnishing and general upkeep.  There is no evidence to indicate that Mrs K would have wished to occupy a shared room – unless it was with someone she knew and chose to share with.  Therefore single occupancy should be sought as it could compromise Mrs K’s privacy, dignity and choice to be placed in close proximity to share a bedroom with a person that is a stranger to her.  As the information gathered indicates that Mrs K previously expressed a wish to have “her own things around her” then arrangements would need to be put in place for her to take some of her belongings and possibly some of the smaller items of her furniture with her to a care home.  It might also help her to become orientated more quickly in a new environment if her own room contains items familiar or meaningful to her. 

16. IMCA Story Mr. M • Case:  Accommodation decision for client in Hospital with no home to be discharged to, Social Worker had commented on how client was ‘obsessed’ with getting access to money or belongings and therefore ‘refused’ to discuss anything else: • Mr M was very concerned when meeting the IMCA at the fact he had no money and no possessions – and was very worried about how he was going to get any.  It may be quite understandable that he would be preoccupied with this when meeting anyone that he thinks may be able to help him sort this concern out.  Mr M does need to be provided with items of clothing such as trousers, shirt, socks, slippers, underwear etc and any toiletries that are not normally provided such as soap, toothbrush etc as his Dignity is seriously compromised by a lack of these and without the means to purchase them.  Also – he needs to be provided with practical assistance and advice as to how he can sort out his financial situation either with accessing his money or processing a benefits claim.

17. IMCA Story Mrs. C Accommodation decision from own home shared with long term friend/lodger to possible placement – client had previously had radiotherapy on her scalp that had left scarring on her head which apparently she was very self conscious about.  Mrs X’s friend/lodger, Mr Y, advised of this fact when talking to him on the phone and he emphasised how important it was to her that her hair was combed over to cover this up and also advised that he had told Hospital staff this on more than one occasion but there was nothing recorded on her notes/file regarding this.  During course of involvement it was discovered client was dying and was not able to go home at all. Mrs X’s personal dignity requirements also need to be met by ensuring details that were important to her such as combing her hair as she would wish it to be combed (to cover the scars on her scalp) and ensuring matters of personal grooming – such as cutting her toenails are attended to in a timely manner.  Again Mr Y should be fully consulted in any care plans made in this area as he has a long standing knowledge of Mrs X’s values and beliefs.