Meeting with Stephen O'Brien Shadow Health Minister for the Conservatives.

[wendy]

This is where we are going for the meeting with Stephen O'Brien on 23rd October.
http://www.archimage.co.uk/portcullis.htm

[wendy]

Thought you may be interested in this.

Strangely, I am going with someone who also spoke at the Conference about Carers.


Taking the stage at Conference
Marianne Talbot, Monday, October 6 2008
Last week my mum was a star at the Conservative Party Conference. Stephen O’Brien MP had invited me through Carers UK to participate in a debate with him and Tim Hammond, the MD of Barchester Homes. It was chaired by Martyn Lewis (yes, the one you used to see on television every night!). It was great fun. I hope no-one could see my hands shaking!

Just before the debate Terry Pratchett, the author, spoke. He has just been diagnosed with Alzheimer’s and is using the energy occasioned by this to campaign on behalf of those with the disease. He has donated £1/2 million to Alzheimer’s research. I was uncomfortably aware of him as I spoke. I didn’t pull punches about mum’s condition: how dreadful to have to listen – in public – to a graphic account of the nightmare to come. A brave man (and fun too, as I discovered over drinks afterwards!)

Having put up pictures of my mum, I told them about mum’s condition, describing everything from her joyous sense of fun and her love of children, to her weeping and desperate desire to die. I talked of her incontinence, her need to be fed and her inability, now, even to dress herself or construct a meaningful sentence. Finally I talked about being mum’s carer; the sleepless nights, the despair, the guilt, the tears and the pain as well as the love, laughter and joy. I’d like to think there wasn’t a dry eye in the house!

Afterwards lots of people came to talk to me. Everyone spoke of their mum/dad/aunt/granny. So many people, so many personal tragedies. I hope the fact that at least one of the main political parties is addressing the issue is a sign this might change – I am holding my breath....!

Marianne is a university lecturer, a carer, and a regular blogger at Saga .

http://www.conservatives.com/News/Blogs ... rence.aspx

[pixie]

Good luck next week Wendy.

Let us know how it goes.

[graham]

Yes.....We shall be thinking of you. 

[Honey]

Good luck for next week too.

[maureenho]

All the best for next week Wendy, will be thinking of you.

Mo

[wendy]

This is what I will be taking--- Your words.

I will be telling him more, so if your situation is not mentioned then please be aware of this.


Chill4Us Care Watch

Comments from carers who use the site

1. Money matters 1
2. Medical Failures 4
3. Care Homes 5
4. Care in the Community 5
5. Community Chiropodists 8
6. Social Services 9

Money matters

1 .Sorry but mine is the age old thing Money, (without a car travelling to doctors hospitals or a day trip out is so expensive).

2 .I believe that the treatment of carers and the dependence on their emotional commitment by government and LAs is a form of bullying. We do not receive enough respect or consideration.

Ten years of being fobbed off, bewildering meetings and pointless arguments.

Crisis housing and the cobbling together of funds is not the way to provide a service.

There was not the money available to provide my sister’s service. They hadn’t planned for her.

3. Respite and respite with flexibility.

4. Carers allowance taken away because a widow’s pension is an overlapping benefit.

5. I think it has to be the overlapping benefits regulations....It does seem so unfair that when one reaches retirement age & is entitled to a State pension ( which have been contributed to by N.I  contributions over a lifetime of work ) that a benefit such as carers allowance should just stop because of it ! It is quite frankly unjust & cruel.   

6. Soon I will be unable to work, due to the needs of my caree, I can't afford to live on less than I do now, so a decent income for carers.

7. Carers Allowance should be increased. It should not stop at the age of 60 even if a lesser amount can be claimed for those on pension credit. There should be a bus/travel allowance for carers.

Going back to work would be like a holiday for me, there's nothing I'd like more than working a 5 day, 40 hour week, plus paid holidays.

A lot of people mention the overlapping rule, with my oh been quite a few years older than me and on his pension it of course applies to us as well.
However a decent income for carers, all carers is what we are all looking for.

One thing that I as a person who only knows and visit two carers sites has picked up is that there are many out there lacking knowledge of what is available.  My thoughts are that one free phone number and one website that gives all the information there is may be of great help.  Who provides what, and where to go to get that help?  That carers are so desperate that I in my limited time as one know of two that have rang the Samaritans in sheer desperation is an appalling situation and one that make me ashamed to live in a country that allows that!

I can only comment on what I know and it seems that firstly, they need to advertise themselves and secondly, if they are a charity for carers they are not offering many helpline hours.

I wonder how many carers are still totally unaware of CarersUK, the carers' charity.

As an example, I went to a group that has nothing directly to do with caring to talk about our work and perhaps secure a small donation. Of the 15 people in the audience, all were carers or had been carers. Three joined there and then and all three needed help. I could quite literally give talks like that every day - but we do not have the capacity to pick up 12-15 extra cases a week: we would need at least 2 new full-time workers to cope with the extra work, and there is no money for it. Carers are not a "sexy" charity case and so it's twice as hard to get funding.


13.Direct payments, with regard to respite, are the preferred strategy of government and local authorities as they take away the responsibility to provide care and respite.  I do realise the benefits of direct payments, but I think it can be inappropriate to ask the most overworked people in the country, to become official employers, with all the responsibility, administration, worry and time required to perform that duty.  I think that it should be officially recognised that direct payments are not suitable for everyone as they do not have the time or simply the brain capacity left to handle one more thing, like becoming an employer responsible for taxes, employers insurance, national insurance contributions as well as having to recruit the people required to perform the tasks!  It just would be nice if he was made aware that direct payments are not the answer to every caring problem.

I'd also like to see what the government view is on the difference between what carers and their loved ones are assessed as needing by SS in their assessments, compared to what they actually receive from local authorities, and consequently what is the point in an assessment if the authorities have no obligation whatsoever to try to meet that need?

I wouldn’t want direct payments, as there is no way I could take on all that it entails.  As long as the ones who have it are happy it must carry on.   So in anticipation that one day I may need some help, I think it could be a valid point to bring up, and an alternative found for others who would like a different system be available.

All that is really needed are decent honest caring staff that can do the job properly, sadly for many people they don’t receive anything like they should be entitled to no matter who is paying whether it be ss or dp.

I can’t even get the flippin social worker to call me back this week, so I’m going to write to her just because I want to ask her a question about Jon’s entitlements; it’s an absolute joke half the time.

My daughter has been forced to use DP to pay an Agency who only cover 4 x 2 hours per week when it should be 5 days, no weekend or bank holiday calls as we have not been allowed enough to pay the extra the Agency charges, and their carers are so inexperienced they do not know how to use a hoist, one of the carers in particular have only been staying 1hr-1.1/2hr and we now have the bill claiming 2 hours each visit, I phoned the Agency they are looking into it, the same carer nearly caused a fire in my daughters kitchen Monday when  the Agency was told smoke alarms went off she Laughed, I now have to phone them again tomorrow as same carer only stayed 1hr 15mins today, is this the standard of care we are forced to accept, DP is just making more work for me in more ways than one, I really feel like telling them to shove it, Social Services are so slow responding and don't seem to give a toss about anyone only themselves, we do the work they get the glory.

I would like to see the paid Carers from agencies graded, what I mean is how competent they are, as the cared for have varying degrees of disabilities and a lot of these carers can't even use a hoist or even know anything about the illness or disability the person suffers from so they don't know how to handle them, a little understanding goes a long way, I speak as one who was a paid carer before caring for my daughter and I took the time to know the people I cared for and there condition and it helped me enormously with my work.

Carers would benefit from having some type of carers’ card that they could carry wherever they go, to enable them to use this as id when going to places or using transport etc. at the moment I have to take the dla letter wherever I go as proof.  A national carer’s card.


19. In the cosy world of government, there is no acceptance of the idea that someone can be caring for more than one person, yet I know of three families in my area where there is one carer looking after 5 or more people. What help from social services? None, originally. But in almost every case I've come across where there is one carer for more than one person, no consideration is given to the extra impact of caring, no thought is given as to how that person manages, the pressure on them. Social Services are so wrapped up in the individual "service user" (I hate that term) that they ignore the effect on the individual carer. And so it goes on.

20. For me it was hard at the beginning i had never been on any benefits, and when oh took ill, we had no idea what was wrong or what to do. finally he got a diagnosis, spinal canal stenosis,plus lots of other things, he is on warfarin, and a diabetic he is 70.
fighting the system to get aa and ca was horrendous
we were not told anything, and ca is overlapping, allthe money was in a total mess for months.
now we are struggling and i have to go out to work to help, who will look after oh, my neighbour said she
would be around if needed.
Medical Failures

In Sept 2005 I called the out of hour’s service as Dad was in pain; this was about 2.00pm they didn't come until 10.30pm! This was in spite of several phone calls, when the nurse (not a doctor) arrived it turned out she had got lost and was on her way down towards Diss! She said he was just constipated - I told her I thought it was something else though I didn't know what - she gave him a laxative which was no good -I got fed up and phone 999 - Dad admitted to hospital and diagnosed with diverticulitus. The hospital told us he needed to follow a special diet to avoid it in future - in spite of several requests the hospital failed to provide advice from a dietician/diet sheet. They also discharged him too early in spite of my "arguments", I had to call an ambulance at 2.00AM the morning after his discharge to get him back to hospital - he was in for another week. He also missed out on a meal, he wasn't put on a low fat diet for six days of the first week he was in - I had given the staff three reminders! We were offered the chance to get an assessment from a speech therapist - this never materialised.

Last time he was in hospital March '07 - we were refused hospital transport in spite of him being eligible under their own rules - we were told we had to get a taxi. I had to contact my brother who is a care worker himself as I knew he had training in lifting/carrying - he had to leave off work to do this.

Why are nurses allowed to take home their uniforms for washing instead of having them cleaned " in House"

A while ago I had to go for a blood test. I was sitting watching and noticed the staff were not wearing gloves when taking blood or washing their hands in-between patients. When it was my turn I asked the lady to wear gloves before she took my blood, she said it was normal practice to do this but not everyone did as it took too much time!!!!!!
I wrote to the health authority who assured me that staff would be receiving training on wearing gloves in the future as it was a part of their training schedule.

Training to wear gloves and wash their hands....how hard is that.
Care Homes

My father has been given a hospital appointment at an out patients clinic, which my mum passed it on to the carers at the village where he is in residential care.

2.They told mum and brother that they would have to take dad to the hospital etc.. The reason of dad being in the residential care is because my mum is not fit to look after him in both ways emotionally and psychical. My brother said he is very frail, that what happens if he has an accident in their care who would be responsible for him..

3.Is this a normal for asking relations to take their loved one to the hospital for check ups???

4.In December 2004 when my mum suddenly started to become incoherent and very sleepy, I called the Doctor he said he would not come out see how she is in the morning, I had to stand my ground and insist he came out, he immediatly called Ambulance, had it been left she would have more damage than it's left her with or even death, her diagnosis was severe B12 deficency.
5.update re Hospitals too far away

Good News, I became very upset on the phone and a Macmillan Nurse arranged for the admission phone call to be by 12 noon
booked me to stay for 7 days at nearby Seacroft Hospital free of charge thereafter £7.40 a night. I am so relieved.

This service should be offered to all who travel above a certain mileage, not only when a carer cannot cope anymore and breaks down.




Care in the Community

Care in the community is a great way of allowing people to stay in their own homes, but only if Social Services and other involved agencies stop passing the buck by saying they can't help, when the recipient says no to receiving care/help. Very often the person needing help has problems understanding why. With the right sort of training in person skills for all providers and a continuity of equally skilled paid carers if needed, most people would / can be encouraged to accept the help they need. I speak from experience, which I won't go into now, but it has made me very aware of how the system can fail our elderly and most vulnerable.

I posted before about the way Barnet Council is closing the group living accommodation for mentally ill people in favour of them living in independent flats. I'm sure this is wonderful for those who can benefit but it makes it very difficult to protect those who can't. You are told you are holding them back.


In Scotland we have free personal care.   However Highland Council had a massive overspend and have drastically cut services to the needy.

My father recently moved into sheltered housing on the other side of town to where we moved to be close to him and support him in his old age.    He is 87 and has many health problems some physical and some medication side effects which can not be reversed.

He agreed to attend day-care three days a week and constantly moans at having to go as he feels the cold and would like to hibernate in the winter if he had the choice.   Since moving to the sheltered housing he has further to walk from house to bus than before when the bus collected him three steps from the doorstep.

His homecare care plan in essence is fine, with a carer in the morning to get him up showered and dressed and attend to his feet and legs, and an evening call to re-heat from frozen a home cooked (by me) meal, and wash up the dishes of the day.   On the days he attends day-care he does not get the evening call, but it is a battle royal every time he is too ill to attend day-care to persuade the homecare to provide him with the evening call.    If he had never agreed to go to day-care he would get the two calls a day without argument.   Social workers say "it goes without saying he would get the evening call if not at day-care"   but we can not get the care plan changed from ll hours per week to 11-14 hours a week, which is what it should be!

I am not trying to shirk my daughterly responsibilities, but dad is entitled to this care, I have my own health issues to deal with and manage to do all his shopping, laundry, cleaning and cooking every week.   I am full time carer to my disabled husband who as well as having a locking hip joint was diagnosed with cancer last year and has had five operations all major, and the last to remove a blood clot.   He has no immune system, but can I get the homecare to understand why I can not attend dad when he has the cold or flu, I have had better conversations with a wardrobe!

My father and many others like him gave their time to save our country, and for what a miserable existence with no respect from the beaurocrats he keeps in office.

Mr Steve McCormack, for Norfolk PCT Mental Health Commissioner
Wants more money to be allocated into mental health services so there will be more opportunity, which would enable decisions to be made locally.

5. A lady whose son has OCD wants more supported housing to be built in the community.It is impossible for her son to share a house with someone because of his illness.

6. As the father of a teenager with Downs Syndrome I fully support access to mainstream education for all our kids - the benefits are huge not just for our kids but for all the other regular kids who can learn so much from inclusion. In a few years time my son will be applying for his first real job, and I really hope that the people who are interviewing him have had the experience of getting to know how fantastic and capable our kids are and how much they can achieve.


7. Don't loose sight of what carers experience in trying to return to this Sad New World when the caring stops. For those like myself that took drastic measures to try to remain solvent during the caring days , they are now penalised by NOT automatically qualifying for Job Seekers Allowance ....... and for those like me who drew down private pensions ( with every potential of loosing thousands in the future ), unable to receive JSA because my income is considered to be too high !

Suffice to say, I am now worse off by the sum of CA ....... derisory when received but would make all the difference now. Outgoings around the same but income down by 42% !

Community Chiropodists

My husband has had a community chiropodist sorting his toenails out for around five years. We never knew when she was coming. She would just turn up.

The carers have asked me to get her to call as his nails are getting quite bad. When I got through I was informed she had retired a couple of weeks ago. They haven't got a replacement and the waiting list for their clinic is three weeks.
As most of you on here know, my husband has a grade four pressure ulcer and the district nurses are constantly telling him to get off of it so he has been bed bound since Christmas.

I then rang my doctor’s surgery who phoned me back after speaking with our GP. They told me I had three options.

1.Take my husband to the clinic when they have an appointment available.
2.Pay for a chiropodist privately.
3.Do them myself.

The annoying thing is, he has pressure sores on his toes, we can't afford to go privately, his nails are getting longer and longer and with all this aggro they're going to get much worse. I think the only option I have is to make an appointment at the clinic for whenever they can see him and keep my fingers crossed.

Another annoying thing is I really struggle when I have to take Pete anywhere because I have to push 28 stones (hubby AND the wheelchair) up the ramp into the van and my doctor knows this. What would happen if we didn't have a van? They would then have to so something no?
 
If I did them myself and made a mess of things, who would be liable?

Is this another funding thing do you think?



Social Services

Social services do not give advice, nor the rules etc, you have to find them out yourselves. They are intrusive {nosy}, they just read from the rule book,black and white {some social service people are good; specially Max who looked after Dad and myself taking us to the crisis home. He was appalled to see the state dad was in, asked how long mum coped with this situation. He could not believe it..}

2 .    I blame social services for the state of health mum is in, I told them if you do not help us with respite care, we could lose mum or make her very ill. As they say if dad said no, then they cannot make him do anything, Even if he does not understand the word No. Nor anyone instructed her son to what duties a carer does, or can get in aiding looking after dad.. There is no continuity with same social worker; years ago you had the same social worker who knew the family, not the modern way in just a passing problem to unknown social workers when they occur.

3.  When we will get the 24 hour free help line?



The above are postings made by our members of the Chill4Us forum , written in despair and trust that you will read them and help us.

Thank you.
Wendy Maxwell

[annie]

Wow Wendy you certainly have done us proud

[graham]

Thank you Wendy.....I have read through the items & in my opinion it represents a comprehensive list of views & concerns expressed by many carers on these boards & on others. There can be little doubt that the Tories will be forming the next Government & I profoundly hope they will at least 'take on board' some of our very legitimate concerns, worries & indeed fears......I am grateful for your efforts on behalf of people like me.....x 

[sandy4]

Advertise! 

I think we do need to do this.  Far too many on the outside see “Ladies of Leasure” when she has not to go out to work; and the same for a male carer.  It is one thing for a petition to whoever; but that is not the general public who in the end will be footing the bill.  They need educating and only we can do that. 

[wendy]

[wendy]

[evelyn]

[ColinB]

without wishing or meaning to put words in Sandy's mouth as it were..what i think he means is that the problem is not the politicians at the end of the day..i'm sure many/most of them would do more to help carers, but with the perception of caring by the general public. until this has changed sufficiently from the "lady of leasuire" mentality, the presiding government will be limited in what they could do, as the general public will not be happy to pay more towards us.

again, sorry if i'm putting words in your mouth here Sandy..just my interpretation at the end of the day.

[wendy]

[wendy]

Tomorrow I will be travelling to London to meet with Stephen O'Brien, The Shadow Health Minister for the Conservatives and taking your postings with me from our Chill4us Care Watch.

I thought you may like to see who is coming with me.

You can rest assured we will all do our best for Carers.

Moira Goodey the Manager of Norwich Mind.  Moira came with me to meet Ivan Lewis MP and Norman Lamb MP.

Gordon Conochie has taken on the newly created role of policy and parliamentary officer at partner organisations Crossroads Caring for Carers and the Princess Royal Trust for Carers. Conochie previously spent two years as a major donor manager at the Princess Royal Trust for Carers.

Trevor Ivory  Conservative Candidate for North Norfolk
Trevor lives in North Walsham with his wife, Lisa and their young son, Alex. Trevor studied at UEA in Norwich and has lived in Norfolk for over a decade. Trevor works in Norwich as a solicitor.

[pixie]

Good luck tomorrow Wendy. I will be thinking of you.

[graham]

Yes....I hope it all goes well Wendy.

[annie]

and me

[douglas]

best of luck for tomorrow wendy
      dougxx

[maureenho]

All the very best for Thursday, will be thinking about you all.

Mo

[Bernie]

Good luck for tomorrow, you have put a lot of hard work into this. The thanks of all carers are sent to you, Berniexxxx

[cornflake]

All the best Wendy, we are very grateful for all you do for us.
Jenny xx

[wendy]

[HotSheila]