Incontinence

Absolutely not - I would report what you have been told to the local MP. If you were told this by a nurse then report them direct to the NMC as this is a contravention of their code - Dignity is in the first sentence of the code.
Also contact Action on Elder Abuse.

Also put what you have said here exactly - in writing using the PCT formal complaints system. You have provided the details - simple and straightforward.

It is this type of evidence that is required to change practice and challenge bad practice.
I have heard of this type of example before but only second hand which is much more difficult to use.

I would suggest that you also contact the Patient's and Relatives Association as they produced a large report of case studies last year and are now in the process of producing reports on the evidence in the other countries, Scotland, Ireland and Wales.

Thank you for sharing this. Hope to hear what happened next so do keep in touch.

Kindest regards,

Lorraine

Lorraine Morgan
Iechyd a Gofal Cymdeithasol

The Open University in Wales
Y Brifysgol Agored yng Nghymru

18 Custom House Street, Cardiff
18 Heol y Tollty, Caerdydd

Tel: 029 20 471019 (switchboard)
Tel: 029 20 262760 (direct line)
Mobile: 07 827 895 862

Please note that I only work 3 days per week so I may not be able to reply to your email immediately. Thank you for your patience.

Thank you for your reply Lorraine.

I've been to see my MP and he has written to the continence service twice already on my behalf. His letters have been responded to with half truths and downright lies. He now intends to write to the CE of the PCT.

At your suggestion I contacted the NMC. I did this by telephone and in retrospect, I should have written. Maybe I'll do that. In short, they weren't interested and said I should take it up with the PCT.

I have the DIC poster in my sitting room window along with a copy of my post on this forum and your reply. The nurse who told me what to do with the incontinence pads called here today so she must have seen it. I hope she felt ashamed.

I'll let you know what happens next.

Best wishes to all champions.

Maureen

Maureen, this is a very saddening post, but Im afraid to say you are not alone in your difficulties.......................before I type anything further I will say I am not defending the responses and actions of the PCT in question

As a Community Care Practitioner I meet with many customers who are in the same predicament as you and your mother. The allocation of 4 pads in 24hrs is a standard response and is I believe the national agreement on allocation.

As you are probably aware the pads provided come in a variety of sizes and capacity, and your mother will have been assessed (assuming at some point) by a nurse or continence advisor who will have measured intake and output of fluids over a period to assess which pads will be most suitable to prevent as far as possible incontinence over a 24hr period.

I do not believe that this method of assessment in any way sits comfortably (no pun intended) with how we all percieve the issue of giving care that is discreet and dignified is catered for. We are all different and unique, we all have the ability to decide what is the right standard or level of tolerance we require - how can the continence service possibly provide a universal serice that meets all requirements given such a wide array of views and expectations?

The only way the service can work out a standard allocation and budget for it effectively is to stick to a minimum level that is worked out by clinical calculation based on resource performance.

having encountered similar issues as yours many times now I encourage anyone who has what they think as an inadequate allocation to maximise other routes of funding to suppliment the supply of pads they require.

If you arent getting all the advice, support and information about getting and using the benefits you and your mother may be entitled to then I would urge you to talk to your local social services dept or CAB who will be able to assist.

Nickyx

Hello Nicola and thank you very much for replying to my post.

My opinion of the continence service in my PCT area (I have no experience of any other) is that it's rubbish. It does not operate within the Good Practice Guidelines despite its assertion that it does.

No assessment can be meaningful if the only outcome can be an allocation of 4 pads.

The whole idea of leaving someone to sit in their own bodily waste is disgusting and to suggest that they could have a larger pad to absorb more urine to enable them to sit in it for a longer period beggars belief.

No one seems to take into account either just how uncomfortable these larger pads are for a small person. I assure you, one size does not fit all.

I'm certain that none of us who are, at the moment, contintent would like to be put in the position of sitting in our own urine - and worse - for a 6 hour period.

When I first started having problems coping with my mum's incontinence, the district nurse asked if I'd thought of having her catheterized!?!

My mum is in her 90s, deafblind, has severe vascular dementia with challenging behaviour and is doubly incontinent. She has had numerous lengthy stays in hospital with severe utis.

Her behaviour is such that she often refuses to have a pad put between her legs and throws them around the room. What she needs, and what I buy for her as our PCT refuses to supply them, is disposable all in one pull-up pants.

People should not have to access benefits to be able to get the products they need to manage this very difficult condition.

Dignity? Don't make me laugh.

Hello Maureen,
I do understand your sentiments and current predicament - as a practitioner that specialises in working with older people with Dementia, I come across very similar circumstances on an all too regular basis.

Amazingly I seem to be defending the PCT and NHS when I consider a response, and that really isnt my intention, but here goes.........

I wholeheartedly agree with everything you have said about the apparent lack of dignity suffered by those who can no longer manage their own continence; your response was very compassionate and spoken from a position of love and regard.

When I speak to customers who have raised the same issue as you I ask them to consider for a moment the bigger picture - The crux of the matter is that the NHS has limited funding to provide the populus with the resources that are needed, so that being so there has to be a minimum level set in order for as many people as possible to receive 'some' kind of support. The difficulty comes when the resource and funding allocation becomes local and health professionals are continually caught up in the budget v care debate. All too often professionals who have entered the 'caring' profession are asked to make decisions and make resources available according to funding and not need, this doesnt sit comfortably, and some dont do it well at all, as they are too greatly influenced by meeting and performing to targets ...........................it's sad, but it's true and it happens every day. it then comes down to the indivudual skills of the professionals to draw the best balance they can between providing as good a service as they can within the budget constraints.

So getting back to the point of allocation - if every person was given resources to suit their own individual circumstances and preferences then the budget would be overspent before it even began and the end result would be nothing for everybody.(If we all lived in the USA we would all be buying all our products anyway.)

Im sorry, but I believe strongly that benefits should be used to suppliment what the state has already provided at a basic level.

How is dignity, respect and Positive Regard for human life maintained throughout this very business focussed and beuracratic but necessary process?............................That is the challenge of every Dignity Champion.

On a personal note - Does your mum get CHC funding? - if so they have an obligation to assist with things like laundry etc (read their leaflet about Continuing healthcare Funding out to them if they deny it!) I know this may not totally resolve the issue but it may help with you looking after Mum's continence needs over the 24hr period)

Nickyx

Hello Nicky

I understand everything you've said...but...why then is it that the PCT pretends to be carrying out meaningful assessments,
pretends to supply according to need and pretends to follow best practice guidelines.

As for continuing care...don't get me started on that one. Oh! You just did!

This must surely be the biggest fraud being perpetuated by PCTs accross the country.

My mum has met the criteria for continuing care for more than 3 years. She had a long stay in hospital and then a brief stay in a dreadful 'care' home. Prior to this she had lived with me and my husband for some 12 years and she is now back home with us.

The PCT reassessed mum's eligibility in February, it went to panel in April and it was agreed, she met the criteria. Then, we asked for more support to enable us to keep her at home where she could be properly cared for - so they decided she needed to be reassessed again in June. And I know you will find it hard to believe..., but she didn't meet the criteria!!!!

No, there hasn't been a miracle, no miraculous cure. She is still totally blind, she stilll has vascular dementia and challenging behaviour, she is still non-compliant with medication or diagnostics, she still has temporal arteritis as well as all the other health conditions she's had for the past 3 years.

The MDT in fact agreed that her condition had deteriorated since her last assessment and she scored higher in three domains...

...I think I smell a fish.

With regard to laundry etc. It would not matter what I read to the PCT staff that peddle these disgusting policies or implement these corrupt practices. They are quite prepared to say that black is white and that the moon is made of green cheese. Ethics and truth do not enter the equation.

The PCT is well aware of its obligations and even better in adopting methods of evading them.

Oh Maureen, I am so saddened by your dreadful experiences with the PCT and from what you have said I can well see why you feel about them as you do. unfortunately it would seem that PCT's like ACS can differ greatly across the country. It takes so much energy to fight decisions and I am sure at many times I am sure you must feel like chucking it all in with them..................have you challenged their decision about not meeting the criteria? (am pretty certian there is a robust ombudsmen type process for all appeals), might also be worth telling all this to the MP (if you havent already done so.

I have recently completed some work with vulnerable frail elderly people and their continence needs that involved CHC assessments (wont go into details for obvious reasons) but my final stumbling block to overcome was when I submitted a number of CHC assessment referrals...................I was questioned as to my 'suitability' to complete an assessment checklist by the PCT administration and they wanted to know if I had any training or qualifications in order to be able to put ticks on the checklist!..............thankfully I managed to retain my sense of humour whilst I rattled off over the phone my list of qualifications in both care and care management, and then told them in no uncertain terms that I viewed their position both unhelpful and unwarranted as NHS guidance does not specify who can, or cannot complete a checklist (only that they should be a social care professional).......................I dont need a frilly cap to make a nursing care based observation!

Anyhow - the result was that the referrals I put in were all taken up and on acount of the detailed supporting evidence that I submitted with each referral meant that the person conducting the full assessment was unable to question the criteria being met.

The only other suggestion I can think of would be to go to your allocated social worker or team and get them to fill out the checklist ..........................not much help I know from this end, but if you want any other things looked into or some support if you tackle it all again then please let me know and I'll give you my private email.

Nickyx

Hello Nicky

Thank you very much for taking the time to respond to my posts.

I will be in touch with you again shortly (I hope). My mum was admitted to hospital with sepsis and is quite ill. She has a raging uti, an abscess on her nether region and is incontinent of diarrhoea.

I'm spending a great deal of time at the hospital so will be in touch when this latest crisis is resolved.

Despite the registrar putting in place a plan of action yesterday that she estimated would take around 2 weeks, we received a call this morning to say 'they' are looking towards discharging mum!

She hasn't even finished a course of antibiotics yet!

However, the walls and notice boards at the hospital are positively groaning under the weight of posters for dignity in care...so that's all right then...

...call me cynical.

Maureen

ps. The hospital is using in excess of 10 pads a day.

Definately not!! You need to be assertive with the PCT get in touch with your GP. If need be, contact you local MP. I have never heard such rubbish, Your mum has rights she is entitled to dignity and respect, which is not what she is getting. Be pro-active COMPLAIN! Write a letter of complaint to the PCT and your local Social Service turn the tables ask how they would like to be left in a soaking soiled pad. It puts your mum at risk of sores, infection and pain. I assume your mum is covered under the national health so it is cost effective to prevent her being hospitalised from skin sores by providing enough pads. You havent said why your mother is incontinent, is it due to mental issues or physical disabilities? You could approach your argument from this direction in that she has an illness and the incontinence is a symptom of that condition. I looked after my mother at home and I had a full incontinence service so I know it does exist. They will try to make cut backs on service when their budgets are tight but you have sometimes to fight back. Hope this helps GOOD LUCK

sorry, just read the other e-mails posted on this site and now fully understand the frustrating situation you find yourself in. It brings back memories of all the letters and phone calls I had to make in order to get the standard of service my mum was ENTITLED to. Her generation paid all them years into the NHS and when it comes to payback there's no money!! Perhaps we could get rid of the PCT's and use the money for essential care where it is needed. The excuse of having to provide for all and resources low BLAH, BLAH, is rubbish as I said before the cost of hospitalising patients outweighs the preventive care cost. Plus the savings to them of the cost of a nursing home which they would have to meet if they make it impossible for family members to provide care at home by putting these unnecessary restrictions on service. I would also ask you to contact The national carers association which do a lot of work fighting goverments to recognise the millions of carers and standing up for their rights too. Don't give up you WILL get there in the end.

hia, i am so glad someone else has brought this subject up. Also in our care home this is what the Incontinance people have told us.... If the pad is not fully wet then it must be put back on the client......I find this practice disguting....but if we do change it for a new inco pad we tend to run out before the end of the month......Reason for not getting the amount of inco pads required is given as.......budget via the incontinance service......the incontinace team do not take into account people that urinate more than other people or if they have ailments that affect elimination.

Everyone screams care standards and dignity...but all these various outside bodies seem to have their own agended and woeeee betide anyone that is going to infringe on their budgets.....

Until all the outside bodies work inline with the care standards that we try to give then nothing will ever change in care.....at the end of the day it all comes down to budget which ever way we turn......its time the government took control an gave the whole care sector a complete over haul and put money into it to give the elderly of this country their basic needs without care staff having to beg steal and borrow all the time. Its also time the outside bodies worked with us instead of against us ......as that is how it feels sometimes.

If that is the case, then I would be asking the incontinence advisor/practitioner to put it in writing that they are recommending that the wet/soiled pad be placed back on the customer......you need evidence of bad practice to be able to take it further.

What would be VERY SAD was if any care home or carers took notice of the bad advice given. It is wholely unacceptable that anyone working in care would be expected to put a wet or solied pad back on to a person just because of budget restraints - but you have to realise that pads can only be allocated to the national minimum standard. if a customer/resident requires more then you need to look at alternatives of supply for that person to suit their needs and arrange a top up - yes, they may need to buy them, or the family may need to provide them.

Im afraid now it's a case of the loaves and fishes not feeding the five thousand any longer.

Dignity in care cannot be a fragmented approach - everyone has to play their part in making it happen.