Changes to adult social care

I had 2 assessments last year it was mental health team turned me down pushing charities and other things to help from housing counciling mental sheath matters CAB for managing my money going cooking group this group that group. To many for me to deal with. I don't fit critira yet had one to one all my life. Then I complained and get disibilty team they do assesment and said same. I have lots of health needs had falls and last one on the stairs I landed up with free care has such a break I had and a op on the tin and fib. My eldest son called and said clearly she fits more that 3 things plus she has my 21 year old autisic brother at home and has lots more needs and struggling. And has he lives far but a carer said what about a muti agency meeting has being pushed from one social care team and has complex needs and clearly needs health and social care has well need I say more.

Since that we hear nothing I also going deaf I now 51 need to move but I got no idea about using all these agencies they call I don't hear! Some will let me call back with relay uk but most still call! Some hang up on the relay uk. Even my GP don't have online access to book face to face appointments. Indeed I fit critira but health autism and anxieties no mental health takes me on I not selfharming suisidle so not interested. The amount of times theropy been tried it don't work because I prossess it differently.

If medicated does cause me to self harm even prescription drugs like cosine lots of pills cause gastric issues so I don't get medicated no more.

I get no current help on a one to one me and my son have a unsafe home we can not cook we clumsy and dangous we in debt. He goes day centre twice a week  he gets 4 hours one to one but sadly they don't use that time because they won't come in the home to help him cook has too dirty and messy we have no routine we have lack of skills and motivation. It's a very unfair system and no support only my son saying they need to call him has next of kin. Yet they still say they will .ca me what laughs. 

Mums home is falling apart and bidding nothing comes up to suit my physical issues or help tom with sensory like bath with shower so he can take baths. They only let us bid on complexes piper alarm places. Ground floor places. So not much choice to stay close to my mum in care home. And in same town has son's day centre. They won't pick him up if we move out of town we don't do public trasport we see my mum lots and I was raised in this home. My kids was looked after by my mum when I had issues. Ops or in hospital or needed recovery. Instead of supporting me they leave us surly that's a safeguiding issue! 

I don't like the new systems it's leaving folk like me and my son at a safety risk. When In my 20s I set my kitchen on fire. Because I forget it's even on. 

Pancake day this year we set pan on fire son got mild burn and rest was not edible so we had none.

We both cried. My advocote us less and never done my complaints I did I need ombistman but don't understand what's required on there web page I write to them the complaint and say I need to fill the form out I not well educated either.

No one helps me. No one's alone when it comes to this NAS get all this charity stuff money they need to sort advocotes to give us a voice there's not one autism charity that covers my area. It's sad I would even pay I so desperate.

I have also been pursuing this with the contact person I have for the autism lead for my local authority. They say that while they are tasked to provide this training in the near future: "currently no extra funding has been identified by the Government to deliver this training and the resources for it will have to be identified from existing programmes".

Given this sort of training benefits people on the spectrum, parents and carers, and support organisations including NAS, there seems to be an opportunity here to provide voluntary training contributions from the local community. This could include persons with ASDs and parents explaining to GPs and other health workers the difficulties they encounter. There are likely to be good speakers available to do this in the community.

To achieve this could NAS increase awareness amongst parent groups and other organisations nationally to talk to their local authority autism leads in order to make this training really effective?

Thanks, Chloe for all your efforts following this through. I know I was a bit cheeky rounding on you with another set of questions. I shall watch the developments. Cheers.

Cheers Longman, as you say this an important issue. Anthony from the NAS Policy team came back with some more information about work currently being produced by the Royal College of GPs.

You can see some details of the developments on the website but here's some details - training materials for GPs being produced by the Royal College of GPs re: autism

The aim of this project is to develop an e-learning course for general practitioners and other primary care professionals, aimed at improving professional standards relating to the care of people with autism and their families.

The course will consist of four sessions, focussing on the following key areas: improving the understanding of autism among frontline health professionals; improving access to early and accurate diagnosis; improving post-diagnostic support for individuals, carers and families and the management of transition; improving data collection and commissioning of services; and making primary healthcare settings more accessible.

The RCGP is working with DIPEx, a primary care research charity, in order to produce a patient experience-centred e-learning package.

We're currently finalising the area of the Community where people will be able to get involved in upcoming developments and campaigns for the NAS. That should be with us next week and this should be a great way to help us take your concerns on board and help shape plans.

Thanks for this feedback. The trouble is there are no NICE guidelines currently relating to autism and the new guidelines are some way in the future. Can something be done now to promote awareness with GPs?

The report in 2009 Supporting People with Autism through Adulthood found 80% of GPs wanted training. 64% were referring adults with autism to mental health services, 19% to learning disability centres, and 12% didn't know what to do.

Two years on and with the Autism Act in place there is still little comprehension amongst GPs and little prospect. I've read the progress report this April for Towards Fulfilling and Rewarding Lives. There's nothing specific about GPs here. I've raised this myself by means of several emails and got no replies.

Thanks for getting the NAS position Chloe but could I ask if NAS has anything more positive to offer meantime.

Hi all,

In response to Longman's questions about GPs, we spoke to the NAS Policy team and this was their response;

Hello everyone,
 
This is a very interesting discussion and I think that you have all raised a number of really important points. To address a few:

You are right that it can often be very difficult for professionals to recognise autism, especially as they have often had very little autism awareness training. It is why the Adult Autism Strategy focuses a great deal on the importance of ensuring professionals are given more, and better, autism training. Indeed, the Autism Act statutory guidance tells local authorities and NHS bodies not only do they have to include autism awareness training as part of their standard equality training but they also must offer specialist training to key staff such as GPs and Community Care Assessors. To find out  more about the Adult Autism Strategy and statutory guidance visit http://www.autism.org.uk/autismstrategy.
 
Furthermore, another important ongoing project that should ensure that GPs - and other health professionals - get better at recognising autism, are the NICE guideline currently being produced. NICE guidelines are recommendations on the appropriate treatment and care of people with specific diseases and conditions within the NHS in England and Wales. Clinical guidelines are based on the best available evidence. Currently NICE are producing three guidelines, one of which relates specifically to adults with autism and the other two concern children. They will go a long way to improving both the pathway to diagnosis and the support and management of autism.
 
Finally, regarding social care, we too are really concerned about many of things going on locally. While we recognise the financial pressures that local councils are facing, having had their funding from central Government reduced, we are extremely concerned about the impact of cutting vital services which provide a lifeline for so many families.  The right support at the right time can make an enormous difference to people affected by autism, preventing them from reaching crisis point - at even greater cost to the local authorities left to pick up the pieces. It is why we have produced a guide to challenging cuts to help people to campaign locally to challenge cuts in their area. Also, it is why we will be working hard to improve the social care system for people with autism in the year ahead. You can find out more about the changes that will be taking place in social care here.
 
I hope that helps.
 
All the best
 
Anthony
NAS Policy Team

Longman:

I am beginning to see what you mean.

Autistic people sometimes need different treatment from the other patients who are not Autistic.

Less medication and more support coping with life.

If I was not Autistic I am sure I still would not like to  have ring my Doctor receptionist to make appointments.

That is why I intend to change Doctors.

David

Hi Longman,

Thankyou for your questions. Yes, we are listening and are just constructing a reply and will post it shortly.

Thanks

Chloe- mod

Hi David,

I agree I don't know what Doctors can do for their autistic patients. The problem is they are currently the gatekeepers (and will be moreso if the Coalition Government gets its health service reforms and everything becomes GP centred).

So you often have to go through your GP to get a referral for a diagnosis, or for new help with depression or other developments of the AS, or to get a referral for social services help. They aren't the only route but they are a significant route.

So I think it is crucial that they properly understand autistic spectrum conditions and their manifestations in adults as well as children.

I think you can sometimes tell very quickly if someone is on the spectrum; at other times there are no signs. Although recently retired as a lecturer I was also a disability coordinator and particularly helped students on the spectrum or helped colleagues to do so, in respect of teaching and assessment. I've seen it manifested in many different ways, and sometimes it is not at all obvious until you've known the student a while.

I think the old adage "it takes one to know one" has a ring of truth here. I do find myself saying I'm sure he's an aspie. However I don't think I look that obvious myself, and certainly I've got very good at covering up late in life, at least in formal situations. Social events and parties though are definitely not a good idea - the clumsy, poor eye contact, sensorily overloaded me usually ends up sitting alone at the foot of the stairs.

Even a person's case history may not help a GP, and to understand a case history you need to be fully conversant with AS manifestations and behaviour. Some geeks may have AS but a lot of geeks haven't(there are other explanations - sexuality being one - but I cannot figure out why star trek would be relevant to that). So I still think GPs need to know a lot more than they do currently. And I think a campaign is needed (Hi there NAS are you reading these threads?) to get the message across to GPs.

Maybe this doesn't help.....

Longman:

What do you expect Doctors to do for their Autistic patients.?

There is no medicine for Autism and groups for Autistic people are not normally organised by their GPS.

The appointment system is not good whether you are Autistic or not.

You could say it is good for Autistic people that they give you definet times to ring up but I want to change to a GP where you can make an appointment at any time in office hours.

Can one tell if someone is Autistic in five minutes.?

People have told me that the reason why I was not sent to Elliot House is because I am obviously Autistic.

As explained in my previous E Mail it was explained in 2009 by my GP.  the only thing they have on my records about Autism is a Consultant Psychiatrist Dr Samuel who visited me and my Parents once in 1976 when I was nineteen.

My GP also said that I have an Autistic manner.

Two years later I learned that Doctor Samuel died of a heart attack in the Hospital Swimming pool so he has been dead over thirty years.

His successor said at the first meeting that he did   not agree that I was Autistic and remove it from my records.

Well he obviously did not as my GP said that he has no record of anyone saying that I am not Autistic.

May be a clued up Doctor can tell quickly if someone is Autistic or not but the Doctor also needs to know the patients history.

It is possible that Dr.Samuel read my records and saw the recomendation when I was  aged nine about a Shcool for Autistic children was made.

The recomendation about a school for Autistic children was made after I attended for three weeks the Maudsley School which was in London Denmark Hill.

The Psychistrist did not say why he thought that I was Autistic.

David

Hi David,

Wasn't sure if you were addressing your opening question to me or one of the earlier respondents. I was diagnosed six years ago by the county assessment centre for AS where I live. However I'm very lucky that I seem to manage pretty well although informal social situation can be dire and I experience a lot of misunderstandings.

You were probably very lucky, from what I can gather, not being sent to special school in 1966. Understanding of autism doesn't seem to have been helpful and might have taken you out of the education loop or entailed inappropriate drug regimes, but this seems to have varied around the country. I avoided interventions because my parents wouldn't truck any interference; from what I can gather that was just as well; the problem first raised its head when I was about 8, which was in 1958.

GP appointments systems get worse and worse despite government claims. Mine, whatever your circumstances, is either phone up on the day for a wait and see if you get seen basis, or two or three weeks for a proper appointment. Its a lottery whether you get through on the phone. So I think that's a fairly universal experience.

The issue I was raising was the attitude of GPs even if you are diagnosed as on the autistic spectrum. Given my experiences and what I've heard from others, I cannot imagine what happens to people who just think they are autistic because having a diagnosis doesn't seem to make any odds with GPs, who are only interested if you have major textbook symtoms. If you can manage it seems, there's no problem.

I was also on about the assumption, which other respondents were reporting, that yoyu could spot autism within a five minute appointment, and one of the correspondents was reporting being told that they didn't look like someone with aspergers. I've heard this reported before.

Sorry I did not reply earlier.

How do you know that you have Autism?

Autism means having bad social skills and not being able to communicate.

When I was nine a Psychiatrist wanted to send me to a School for Autistic children back in 1966.

My Mother did not believe that I was Autistic as she looked it up in a dictionary and it says Autistic people cannot speak.

She rightly did  not send me to that Autistic School.

May be a School for high functioning Autistic might have been good as I was unhappy at the Secondary Schools.

When I was nineteen in 1976 a Psychiatrist said that I was mildly Autistic.

We did not believe it until my parents were told in family therapy in 1990 but my difficulties are not to do with up bringing but Asperger Syndrome.

I dealt with professionals who knew that Autism is a life long disabilty.

I am trying to change Doctors nothing to do with my Autism but because it is difficult to make an appointment and my new Doctor would be nearer to where I now live.

You have to ring up at 8.30 and 2PM to make an appointment.

My Doctor told me two years ago that I had an Autistic manner and explained to me that in 1976 Asperger Syndrome meant mild Autism.

That was when I asked my Doctor to read my records to find out how I was diagnosed and it goes back to 1976 mild Autism and nothing about Asperger Syndrome.

GPS do need training but not everyone who thinks they are on the Autistic spectrum are on the Autistic spectrum and doing something mad does not prove you are Autistic.

I do not know about individual cases as I probably have never met any of the people who sent those E Mails in this discussion as far as I  know.

David

Hope has identified a good indicator that assessors may not be able to grasp and that is that, even having developed good strategies for formal communication, after a while you get tired.

I'm often accused of showing I'm bored with company, when in fact I'm simply finding it progressively harder because I'm having to work at it.

The irony is it also gets me identified as "a good listener" which is a source of frequent embarrassment. I have to concentrate really hard, as one of the problems I have in conversation is fading out, possibly because I'm getting tired, and I have to read between the lines to pick up the thread. I can feel my eyes going as if overtired. However other people perceive this as me being attentive and listening to them, and don't seem to notice me lose the thread as much as I do. Or maybe I've become good at bluffing.

It means too that being seen as a good listener I get people coming to me to tell me their woes*, and as I'm not good at finding a way of extricating myself, I end up stuck in that mode. (I include the * asterisk as that doesn't mean I don't bore people with my woes).

The reason I mention this however is that I've found it happens to other people on the spectrum and read about it happening to others. It shows how difficult it might be for a GP or clinician to spot that someone has AS traits, as it takes time to manifest difficulty.

AS is often misunderstood and this causes all sorts of problems. I was told by my employment adviser, who I see at the mental health team, that I seem very confident and friendly, with a nice smile. Based on this observation, she thinks that I would be very good in a receptionist role, dealing with the public!. There is simply no way that I could work with the public from 8am to 6pm, the time  the job she has in question, at a busy dental surgery, would  require. The best job for me would be office based, with very low intensity social contact. I have obviously failed to adequately explain to the specialist, who I have only met once, for a 1 hour consultation, that I may come across as bubbly and self-assured when I am in a formal one to one situation, but this is only a self-taught coping mechanism. As soon as I am out of my comfort zone, my stress and anxiety reach fever pitch and I enter fight or flight mode.

The longest I can deal with the public, before I need a long break, is about 1 hour, and this is only if I have someone supervising me. For example, I work the till at Oxfam for one hour every week, but I have a support worker who accompanies me. By the time the hour is up, I feel tired out, because even this level of  social contact with the public is mentally gruelling, although nonetheless rewarding.

Congratulations on a successful result and thanks evidently to NAS for effective intercession.

Could I use this discussion thread to ask NAS whether anything can be done, by way of circulating information to the health profession about visual signs of ASD?

Undoubtedly things like static or inappropriate facial expression, looking down or otherwise avoiding eye contact, lack of personal tidiness or cleanliness, ticks or stimming and some other manifestations might be what GPs look for.

However not everyone with ASD has noticeable stims, and just because someone smiles or looks serious at near enough the right moments, or manages to look at the other person's mouth or nose rather than straight in the eye, is surely not a basis for diagnosis. This is particularly important in medical consultations that may only last ten or twenty minutes.

What are people supposed to do? Act up to make it more obvious? Or just be themselves and not be taken seriously because they don't have the look GPs have seen in a textbook?

I really am astonished at the ignorance manifest by so many medical professionals who suppose they can spot aspergers immediately. 

It seems to me quite imperative that some better diagnostic information is conveyed to the medical profession.

Nice reply.

However,things have moved along a little since my earlier post (this morning).

It would appear that having a jolly good argument with your GP is the way to go.

You are correct in the percieved levels of ignorance amongst some GPs.

After being told,I did,nt LOOK like I have Aspergus and telling the doctor that he did,nt look english but I,m sure he is!! I contacted the phone number given to me by the NAS helpline directly.

I had to leave a message but within an hour I was called back and my doctor,to his credit,has refered me!!

So,thats a result.

But lets face it,3 out of 4 of my kids with my current partner have been 100% diagnosis with ASD..

My son from a previous relationship is in a special unit "somewhere".

The signs point to a genetic inheritance from me.

So I,ll keep you all posted,let you know how I get on :)

RALPH.

I've just read the document prepared for health services and local authorities, and yes it does address GPs but only in the sense of support for people receiving mental health treatment. I've emailed back to ask (as I did at the consultation stage) how the proposals will help people who are normally self-sufficient and not accessing mental health care.

When I got my diagnosis I found out that my GP had said in the letter reluctantly suggesting I was seen by somebody that he thought autism was something children grow out of and thought I was being stupid asking for a diagnosis as an adult. Several years later I asked if he had a record of my diagnosis and he just laughed and said Aspergers, is that a new kind of vegetable?

I'm afraid nothing is been done anywhere to persuade GPs to behave responsibly on this one. Because the individual traits may not appear to amount to much of medical concern, GPs seem blissfully and conveniently unaware of the collective effects of these traits, they treat anyone presenting with able autism as a malingerer.

It needs a campaign directed at GPs to resolve this. Can NAS take this up?

The notion that you can assess how autism affects someone in the five minutes GPs usually afford their patients is ludicrous.  But there seems little one can do to fight blatent and unprofessional ignorance.

Any GPs reading this may feel inclined to disagree, but in at least some parts of the country GPs are clearly not taking adult autism seriously.

Thats very interesting,David.

But does any part of that act apply to GP,s?

I,ve just had a very unhelpful meeting with one of the 4 patners at my surgery and I,m pretty convinced that I will be told,I,m not eligable for a diagnosis (at the easy end of a scale) or I,ll politely be asked to find another GP (at the other end).

But I can,t say I,m too bothered.

Perhaps I should do as my 16 year old Son did and climb to the 14th floor of a well known hotel and consider jumping,in order to get something done.

Coz my doctor says I don,t look like someone with Aspergus!!

Mind you,neither does my Son!!

RALPH.

Lets hope that the Autism Act and Guidence will make a difference.

Have you tried to get help since the new Autism Act came in.

Councils are no longer allowed to refuse to do an assessment solely because an Autistic person has a high IQ

The trouble is that Councils will try to get out of helping as there is very little money but may be the new law and guidence wont let them do that.

David

It seems such a shame that there is no mechanism that seems to get round this problem, even campaigns such as "I exist". It still seems to boil down to - if you seem able on a five minute consultation, or you don't present serious problems, then you haven't got real autism/aspergers.

I don't know how we can better convey the fact that autistic spectrum disorders are debilitating even when not obvious. Perhaps over to NAS on this one.....