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Pathways & Cul-De-Sacs

February 22, 2014

I don’t like the word “Pathways”. It’s another example of bollocks speak.

Steven has now been in pain for four weeks. He is in terrible agony when he sits down, although the pain seems to ease on laying down or standing up. In the past week we have been to the GPs four times; had four consultations with them over the phone and been to A&E four times. We still don’t have a diagnosis. Yesterday, Steven went to have another XRay. The car journey was agony and brought on a pain induced meltdown. It took ten minutes for him to get out of the car because he was in so much discomfort. A paramedic stood and watched the whole arrival and on the point of Steven stepping out of the car, she chose to walk in front of him through a very small space. Unfortunately, Steven kicked her. She called security who wanted to push for Steven’s arrest. Thankfully, one of the staff in the hospital allowed him through for the XRay and by this time, the pain subsided and Steven calmed down. As they were leaving the hospital, security had called the police and there were 8 officers waiting for him. The police were great and saw what was happening immediately. They allowed Steven to get straight back in the car and come home. No further action. By the police. Who knows about medical further action? We’ve now got to wait for those results and then for an appointment with the urologist to do a scan. As one of the support workers shouted at the security guard, “THIS …..IS….. ABOUT……PAIN”. Nobody seems that bothered about that.

I’ve learned a lot of the past couple of years about “reasonable adjustments”, so when I got home, I checked out the Trust’s policy for the learning disabled. There are three pages on Hillingdon Hospital’s website devoted to its policy and a whole page devoted to the “role of the learning disability nurse”. A learning disability nurse? This could be the answer to our prayers. On the website, it talks about her role as “creating pathways”. There’s a lot of facilitating and co-ordinating going on. She/he is the bridge between the patient, the carers and the medical staff. She can arrange things that will cut down the anxiety the patient might feel having a hospital experience. It couldn’t be better, could it. I thought I might ask her if she could push through the scan; perhaps arrange an ambulance for Steven to get to the hospital so he can lie down and perhaps avoid the possibility of a pain triggered meltdown before he’s even seen by the staff. I decided to phone her this morning.

The learning disabled nurse only works on Thursday. There is only one of her. And much of her time is spent in meetings.

That was the final straw. I started to search for private clinics. As we still haven’t had a diagnosis, it’s hard to find the right service but Steven shows all the symptoms of a kidney stone (or stones), so that seemed the best place to start. I’ve found one who can see him tomorrow. There’s a consultation fee, a charge for the scan and then we discuss the fee for whatever treatment is needed.

I spoke to a friend about it earlier and whether I should use Steven’s damages to expedite this. I can moan all I like about the service at Hillingdon but it’s not going to get Steven any better. Over the last year, my idea that the money would be important for Steven’s future has taken a big knock. As my friend said, “there is no future”. Such is the nature of our life and the systems we find ourselves in, there is only a present tense.

The big irony is that the State had to pay Steven that money for a horrendous failure. Steven is now having to use his money to deal with one enormous failure after another. But if it restores him to health, that is the most important thing.

Don’t be fooled by fancy talk of “pathways” – they are dead ends. They are certainly not designed with the patient/client in mind. Re-reading the “roles of the learning disability nurse”, I can see that it is all lip service. It is all “promoting” and “partnership working” – nothing hands on that might be useful to someone in pain.


From → Social Care

  1. ParentCarer permalink

    I would not hold out too much hope for the Learning Disability Nurse, spends a lot of time at pointless meetings. When she turns up at meetings we don’t get any useful information. She has been training G.P’s on Enhanced Health Checks for People with Learning Disabilities and we still do not have this for all earning disabled people. I am inclined to agree with you that you use the money to get the treatment as ŵhat is the use of the money if he is having to put up with all the pain. I understand that it was not what the money was for but what the heck they get the money one way or the other and at least Steven would have the pain sorted.

    • Exactly. When I read the roles of the nurse, I can’t imagine her spending any time with patients at all – it’s all about promoting the service etc etc etc

      • Weary Mother permalink

        Mark, our LD nurse was moved to Mental Health role and not replaced….You will know better than most, out of your counselling role, just how dreadful NHS MH services are. Cheapest toxic drugs the very least of it…
        Lack of adequate support for people with LD makes them and their families both physically and mentally ill….it is a grotesque circle dance…

      • Beverley Dawkins permalink

        Hi Mark. We met quite a while back when we did ‘You and yours’ together. You may know I lead on the ‘Death by indifference’ campaign at Mencap and over the years have needed to support many families in a situations like this. Be pleased to try to help so do give me a call at Mencap. Acute Hospital Learning Dasability Liasion Nurses generally do a great job but many are covering huge and multiple sites and health staff at the hospital dont always support them or make good use of their skills. Its always worth talking to them first though. Best wishes, Beverley Dawkins

  2. I’m going to burst a blood vessel…… what sort of paramedic screams for security – what sort of security send for the Police – Stevens disability is for all to see, the fact he’s in great pain is for all to see……..the learning disability nurses are token – a case of the authority ticking the box……

    The Code of Practice to the MCA is an official document that places certain legal duties on health and social care professionals. To not give Steven medical help is wilful neglect……section 44 MCA.
    Hope he is ‘sorted’ soon….xx

  3. Caroline. Hunter permalink

    Will be thinking of you both today. It shouldn’t have to be like this but sadly your horrendouus experience in Hillingdon is being replicated all over. Really hope that Steven will get the treatment he needs and deserves after today’s meeting.

  4. Lisa permalink

    How horrible for you and Steven. Ive been there myself. That awful hopeless feeling of hitting your head against a brick wall. Good for you for going Private. The chances are that the NHS will not take Steven seriously and even if one person does the next wont. Thinking of you and let us know when you have breakthrough x

  5. anonymous permalink

    Royal national Orthopaedic Hospital Stanmore. Mr Shah Consultant Urologist. 0208 954 2300……

    Ask your Doctor for a referral immediately…. Sounds like calcium stones on kidneys…..

  6. anonymous permalink

    Don’t forget tell Doctor all Meds that Steven is on to avoid Adverse Effects….Sorry mate but you need to be PRO-Actice…Tiresome but keep going.

    • Pauline Thomas permalink

      I hope Steven will soon be pain free. I know how helpless you feel when you cannot take away the pain from your loved one. It has got to be one of the most agonising things any parent can go through. I hope this time you can get a diagnosis that leads to helping Steven to get pain free. It is absolutely scandalous that you have to go private especially as the NHS is supposed to be doing all it can to support people with learning disabilities to receive equitable services with the rest of society.

  7. Weary Mother permalink

    I would suggest that you complain Mark, for the situation you describe is disgraceful, but we know from experience that it will only sap your energy further and achieve nothing at all.

    My son is partially sighted and has Downs. He suffers from a severe form of vertigo that is possibly exacerbated by his poor sight. We went to an eye clinic a few months ago where the table with the eye drops and the nurse, was right by a large window that was three or four floors up. My son is terrified of what he calls ‘highs’ and was shaking and grey with fear. I quietly explained the situation to the nurse, who folded her arms belligerently and shouted across the waiting room, ‘well I won’t do it then’. My son’s reaction out of extreme fear could have been much more ‘visible’? than a grey and terrified face? I resolved the situation quietly by my reassurance of him and his trust in me, and by my blocking the window with my body, but the whole event was made miserable, terrifying and brutal by this nurses lack of understanding. The subsequent, pre and post, his recent eye operation was littered with little cruelties and unreasonable levels of neglect and pain. I contacted the CQC about this hospital; they asked if I was going to complain formally to the hospital, I said that I was not ………………….?

    Mark… our sons’ experiences, sadly, are not a bit unique………………………

  8. Sally permalink

    You must be besides yourself with worry but I would say complain-to the Hospital Chief Exec copy to your MP, to MENCAP local branch, to your GP-once you have the description down its just one new paragraph at the start of each copied letter.Even with the scan done privately.
    Private services don’t do A and E and so it is worth yelling about this now for any ongoing treatment or God forbid emergency admissions.
    Your GP should have known that this nurse existed-however inadequate she is -and should have attempted to alert A and E about Steven’s arrival in any case. Perhaps he/she did.
    A nurse on one day a week no matter what she does is grieviousy inadequate. You would hope that part of her role would be to plan with A and E staff for LD people who come in in crisis,and to help those who come for scheduled appointments which would allow more to be set up.She needs a copy of your complaint letter-if she’s set up some sort of emergency management plan for the learning disabled for A and E staff to follow, they didn’t.
    “Pathway” is a meaningless term. Alas, what pathways tends to mean is ineffectual discussions. In a hospital you can’t talk to every staff member, it needs to be in their training, on the check list, drummed in in supervision.Everybody who sees a new patient should have it before them that the person has LD and so the way to manage them is to do ABC.

    (Speaking as one who has had to shout over the top of her screaming son’s head that I don’t know if he’s taken an overdose as he can’t talk-but the bottle was empty-so could they check him out before he potentially dies?..)

  9. Sally permalink

    (In 5 minutes, I can think out a sane job description for a LD nurse-I bet we all can. How’s this:
    The person is responsible for the management of all people with extra needs-this will of course mean she needs to be full time on the role.
    She needs to have on paper, downloadable on the website a guide to the hospital for patients with LD and their families,GP’s etc for every department and A and E-where it is, what happens who you see ,with PECs and pictures. There should also be info for parents and carers on what sort of extra help is possible and what to ask for when they call or come in to make sure staff can line this up.
    She needs to train staff, especially in A and E in the care of people with LD who will be flustered, often in pain and likely to behave in difficult ways-yelling/not following instructions, kicking etc.
    She needs to answer speciific queries from parents and carers and to work directly with patients and families.
    She’ll need to be well trained .
    Not a pathway in sight.)

  10. Sally permalink

    Mark! This just in! Our LA is holding a meeting on the wonders of PIPs and personalisation.
    Title: The Pathfinder Champion thematic workshop”.
    Satire is dead.

    • Are you going?

      • Sally permalink

        I am torn between not going-and reading that it was a great success and the only parents who had any quibbles just needed it explained to them. Or going-and trying not to throw things along with all the other despairing parents. Do they really think we can be flattered into buying this if we are called Champions?What next-a mask? A cloak? Special badges?
        Yes I’ll go. Chair by the door.

  11. Weary Mother permalink

    Sally, what does ‘thematic’ look like?

  12. Sally permalink

    I don’t know. It sounds like some sort of background thing (“the movie has a Scandanavian thematic”) anyway nothing solid or practical.

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