That extra mile

As many of you will know - I am a huge fan and advocate of the work done by all the team at the Pain Clinic.Phone calls from David's consultant, follow ups to questions I may have and just the love and care they show to us both.

Over the past months David's condition has continued to deteriorate. Not just his body but also his mental state too. This has caused added pressure for him in trying to cope - and he hasn't.

The pain team have discussed how to help him with the usual option of a CPN not being the most appropriate answer. Chronic pain and depression in varying degrees are best friends and as the pain never goes away - neither does the depression. CPN's are left scratching their heads how to help. Unable to continue in their search they invariably do 3 visits, tell him they will leave his case open for a certain period and do get in touch if things change.

At the pain clinic yesterday for his regular acupuncture, Judy one of the best on the team asked himhow he felt about a befriending service? At this moment I don't know whether it is something new, soething the pain clinic have started or what. But she suggested someone to accompany him when he goes out to places he enjoys. Or would enjoy.. Glasgow's Transport Museum was just one possibility. Judy will find a match with someone who shares his interests.

This would have so many benefits for him. Motivation he so sadly lacks. Having to push himself just a little as someone is coming to collect him. Company - with a person with similar interest. Oh I can think of dozens.

For both of us but in particuar me - a break A few hours respite. A chance to recharge one failing battery. My list of how to spend those few hours was almost endless.

It won't be straightforward. Pain is unpredicatavle and will not say - OK next Tuesday I will give you a day off. But to have something to look forward to can kick it in to touch sometimes. He will have to pace himself and may only get 30 mins out and I will pock up the aftermath as usual but he wants to try it.

This is the pain clinic caring for someone, and their carer, at the highest level. Going that extra mile. Thank you Judy and of course the bestest ever consultant - Dr Sabu James.

Pat x

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61 Replies

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  • This really sounds like going above and beyond from the pain team, it must feel so good to have that level of support. What a brilliant way to motivate David, and to give you chance to catch your breath. I'm very much in the cycle of pain and depression, and so far have come up with no answers as to how to break it. Perhaps a referral to the pain team might benefit me? Thanks for posting Pat xx

  • Get you a referal and take my post with you. Let's kick them all into action. Mot literally or you will fall over!

    x

  • Yes' well I wish he were mine, as I live in London and my pain clinic won't even answer E/mail from my GP, but glad you getting the best care.

  • David gets the treatment - I get the kiss from him.

    x

  • Hi angel that's great news and I hope David gets a lot out of it and it could not have happened to a nicer couple, my pain specialist is good but not as good as u specialist

    Petexx

  • Thank you. David said having a nagging wife does have its advantages!!

    Early days but will post when we have seen what happens.

  • Sounds like you have struck gold with your pain team. Mine left me with....we can't help you with at further treatment, we don't recommend you stay on your level of painkillers because they will eventually make you ill by interfering with your hormonal and immune systems. We'll leave you with an open appointment for 6 months but don't know how we can help. Despite asking for pain relief advice, nothing.

    I am so pleased that you have an excellent team, you deserve it from what I have read. Sounds like they need to educate other teams on how to do it right!

    Best of luck and take care.

  • There is a National CP group with guidelines but.....We all have limited energy and fighting the pain is draining enough without battling with the add ons. I do wonder someties why Doctorss specialise in CP? Ours in an anethetist as his main job and does the clinic almost in his spare time.

    But even front of house staff enssure any messages get though to the right team member.

    And I do send fresh free range eggs whenever I can. Who said bribary?!!

    x

  • Nothing wrong in a bit of bribery,if it works Id send the chicken. Hope it works out alright for you both. Like someone said couldn't happen to a nicer couple. ( And you still keep your sense of humour )

  • What a great idea. Maybe other pain clinics should follow the plan.

  • There you go = something to do in your spare time!!

    x

  • So glad your Pain Clinic is so helpful. Acupuncture at the clinic ? Services are so variable according to region and even town or village. I have the best GP practice I could imagine but the Pain Clinic is so understaffed and unhelpful.

    I'll message you Pat CD

  • Our GP is very good and doe work closely with pain clinic. If they suggest a certain drug he prescribes but mostly it comes from David knowing what he needs. As with all CP sufferers - you know yourself best.

    I rang last week and said he is ready for spinal jags. Noted and appt comes out by return. Usually appt within 2 weeks too but little longer this time cos Dr James is away on holiday!

    x

  • I'd love to know what part of the country you live in Paton? I attend a Pain Clinic at a London hospital, although they mean well I just feel they have given up on me. I suffer with 24/7 chronic nerve pain following a bout of shingles 10years ago (it's called Post Herpetic Neuralgia). The pain is down my left side/abdomen and back and the only pain killers which give any kind of relief are strong 'A' class opiates. After attending the clinic for 18 months they have become disinterested and very negative - oh for a wonderful pain clinic like the one you describe, it truly sounds fantastic. My pain clinic is obsessed with the cost of everything and this just makes me feel worse.

  • Scotland Katel! Although over the last 20 years we also live in Yorkshire where treatment was the same.

    The problem many clinics experience is too many referals by GPs for what would not be classed as chronic pain. Many people get these referals for injurie that do get better by the time appt comes around and don't bother to attend. That time could have been better used to long term patients.

    We do work very closely with the Scottish government too who are etremely aware of how devastating CP can be.

    If people are lucky and can manage juggling work and strong meds then so be it - Westminster only works people to work at whatever costs and this all has a hug effect on CP mental health.

    I don't have the answers. Just move to Scotland. We did!

    x

  • Sounds a great idea Paton! I'm lucky I have a great GP and he has done more for me than the Pain Clinic, at least he hasn't given up on me nor does he keep talking about how much everything costs! Last year I had a hot 'chilli' patch at the pain clinic which kept the pain down for 3 months, but it costs over £400 per patient, per treatment and getting another one has not been easy. I'm not sure how much worse they want me to get! Looks like its time to start house hunting in Scotland!

  • If you ever move take your GP with you!

    The only time I have ever heard money mentioned was over the cost of those chairs where you drape across face down with a hole to peer through! Used for acupunture and Judy had funding for 3. Unfortunately sshe doesn't have rooom for more than 1. She was NOT going to miss that funding and last sen measuring every room to se if they could fit in.

    Now whay is a hot chilli patch? Not come across that bfre

    x

  • Well Paton, that is good news from you, nice to know many people do get that extra mile from the services. It will give you a break and a little support too, sadly sometimes carers do get overlooked in respect of their needs. My mum used to have a service like this down in Wales from Age UK, and we have a similar service here in Coventry, problem is it is dependent on volunteers to man it, and give of their time. We also have a carers walk in centre mainly aimed at people in your sort of position. A lot of services these days are manned by voluntary workers and they deserve recognition as do carers from all walks of life.Well done all of you. Speak again soon Pat xx

    o

  • Thanks Katie. I guess the biggest plus for me would be to help him through his bad depression. As you probably know - CPNs say go for walk, dig the garden do something you enjoy. None of those are an option for him. Now if this nice young male volunteer insists on taking me shopping instead!

    x

  • That's a nice thought Pat, if I lived nearer I could come and sit with David and you could go shopping. Just wait and see how things work out.xx

  • God bless the NHS. Here's hoping to many an adventure. And spring is the perfect time to plan them. Pen and pad at the ready.

    Definitely a shining example of extra mile taken.

  • I would endorse that nedd. We may be frustrated by what the NHS don't do but I am very aware of the wonderful treatment I have had over my life far exceeding the money that I have paid in. Mostly I don't have to worry if I can afford a treatment. Our NHS is crumbling under the load but just for now we have peace of mind.

    My GP put paracetamol on my prescription despite me saying I can afford it myself ( not the other meds I get) . free prescriptions in Scotland . its crazy.

  • You going to sing Ned or post a jolly tune? That would be smashing. It may br spring but damned cold.

    x

  • Your pain management team sound incredible, it's a pity not every part of the country offers the same high quality level of care. The befriending service sounds a really great idea, your husband will be motivated to get out and about more, while you will get some valuable me time so you can recharge your batteries. Good luck to both of you

  • Thank you Margaret54/ All pain clinics are stretched beyond capacity. I think I wrote somewhere else who here in Scotland the MSPs and Holyrood take it very seriously and show a keen interest, without inteference, of what it going on. We have eve just bought a builging to be run the same as Bath whichhas been amazing.

    x

  • Thats wonderful for you both. I remember last year when my husband seemed burdened by life and my health. Just at that time a girlfriend was inbetween jobs and started to come and take me out. I felt better emotionally so better and he could get on with running his business and going fishing without worrying about me. I do hope they manage to sort out someone soon for you both

    Kitty

  • Truly glad to hear. Hope you get a chance to kick back and enjoy whatever it is you choose to do with your 'time off'. Xx

  • so glad to here they are giving you the help you deserve - your an angel and deserve to have some chill time, after all re-booting the batteries helps you both.

    Take care,

    Amy.xxx

  • The depression may not be due to the pain. It can be for other reasons which are often ignored.

    David has pain. David uses his conscious brain to try and control the muscles in response to trying to prevent increase in pain. This is very exhausting as he using a facility that is not very efficient and uses a lot of energy. The brain needs to protect itself from overload. The very thing that David is trying to do (putting the brain into overload) by trying to control his pain. The result is that various areas of the brain shuts down to protect itself. The result depression.

    Unfortunately most medical consultants do not have engineering training and have never studied engineering systems. This has a knock on effect in that patients are often given the wrong information by specialist consultants.

    An Alexander Teacher can help retrain David's approach to pain which in turn will help with depression problems and help with pain generated by faulty muscle usage.

    Just a hypothesis which may or may not be accurate. It needs an experiment to determine if it is true or false in your case.

    Hope this is helpful.

  • This is fascinating John Smith and always interested in all aspect of CP. Heard Akexander mentioned before. Is this something you have studied or been treated by?

    If depression is not caused bt CP then what is the answer?

    When he has something to look forward to - like a visit to a model railway shoe, his spirits life. The pain is still there but gets over ridden by the pleasure he gets from doing something he enjoys. That could be said for any one though - a long awaited holiday can life spirits.

    I'm not sure what other reason for such a black hole there could be?

    x

  • I have been doing Alexander Technique for about 40 years. Over twenty since being left with chronic pain after a Road Traffic accident.

    One has to careful about terms caused by or not caused by. The expression "contributes to" is possibly more accurate. Our body and the way it works is an engineering system. All engineering systems have a stress breakdown point. We reach the stress breakdown point by adding all the stresses together. Have no knowledge of how they add together. Chronic pain can be a major stress which when combined with all the other minor stresses can push an engineering system past its stress breakdown point.

    I find meditation and mindfulness helpful as they give me the tools to observe and study myself. These tools enable me to find out what is helpful and what is not helpful in attempting to keep my stresses below the stress breakdown point.

    'chronic pain dementia' is a good term to describe the memory problems chronic pain sufferers suffer from on occasion. I put it down to overload of the brain and the various mechanisms that are occurring to protect the brain and its parts from overload. There is another mechanism in that various pathways in the brain operate at different speeds. Because different parts of the brain operate at differing speeds there needs to be a synchronisation mechanism to get the right information to arrive at the right time for an event to take place. Sometimes this does not happen and a memory is lost as a result.

    Be careful of pleasure. This can drive depression. Being in a state of pleasure takes energy. It is possible to reduce the energy resources too much by pleasure leaving the brain requiring to shut down. Before I was a chronic pain sufferer this problem did not exist, after I became a chronic pain sufferer I found that over indulging in pleasurable activities took its toll. It took me a long time to understand the relationship between enjoying pleasure and paying a price with depression afterwards.

    To finish, the only answer is to study oneself and observe what happens when events take place. The medical expert is an outsider to ones own observations. Everyone has different strengths and weaknesses and the medical expert has no idea what a person's strengths and weaknesses are when they make a diagnosis. So a diagnosis that is partially correct for one person may be the totally wrong diagnosis for another person.

    From the observations of events taking place draw conclusions and then refine the observations. From refined observations make new conclusions.

    Hope this helps

  • There is huge logic inn there. A pity social works don't see us all as individuals and not one size fits all.

    Are you married?

    Pat x

  • You are right about the huge logic. Any suggestions how to test the accuracy of the logic?

    Social work is about how people fit the requirements of the law. The name social worker gives the impression that they are there to help with social issues. They are there to see if you fit a particular legal category or not, and whether the particular legal category deems the person is entitled to some form of help.

    Why the are you married question?

  • Cos you don't sound harassed enough to be married!!

    Keep me well away from social works as we call them here. I am liable to say or do something extremely unladylike.

    You aren't a social worker too?

    x

  • PS Just remembered.. Have you ever come across 'chronic pain dementia'? Little is known about it butit does exists and I have been researching it. Most 'experts',and don't we love them, say and form of memory loss is caused by many years of strong opiate use etc. Scans have shown th part of the brain affected by drugs and a totally different part affected by CP.

    It is extremely hard for anyone living with dementia and probably even harder for those who care for someone.

    Anyway as I said a lot more research needed but I am getting there!

    x

  • It has been observed that persistent pain destroys grey matter.

    However if you can get rid of the bugger ie as in hip pain resolved by new model it regenerates. I don't know if that is much help to me though with little hope of a resolution. Also the term pain dementia is unhelpful I prefer pain fog.

    Horns at the ready.

    Honk honk!

  • I hope it works out for him and for you as well as i think carers are unsung heroes in our society and are so often overlooked. And will give you some rest like you said i am glad that the pain management team have been good to david. I wish you all the best Pat.

  • xxx

  • Thanks Poohbear #

    special hugs

    x

  • The 'chilli' patch is Qetenza patch - Ihave been having these adminstered (in scotland) for nearly 2 years now .....they have been amazing ... it allows me to to take less oral meds (which i can barely function properly when taking due to strength of them) the pain team I see are wonderful only problem is the budget constraints and there just isnt enough clinics to provide enough patients with these amazing patches (although I spoke to couple of patients at the clinic and it appears Qetenza doesnt work for all - like many treatments) CP is terrible to live with and I think it is amazing that your team are offering such a service to David - how we deal with CP and how our other halves carry on and just know where we are at is a massive help to anyone suffering this pain - take the respite time Paton and enjoy it - you sound as though you deserve it! ☺

  • Wow sounds amazing and they last so long. Why do you have to come to Scotland for them? Much as we love sharing!

    I did google to find out more.

    So much comes from plants in one form or other.

    Patx

  • I'm so relieved to read your post Paton, how wonderful it will be for both of you to have some respite time - albeit short. Also, the sense of 'sharing the load' that you have received from your wonderful pain clinic must surely help.

    Of course you get wonderful treatment in part as a result of your attitude towards them. Oh and of course the eggs help!!!

    Re cp and depression - pain causes a spike in cortisol, ( adrenaline ) which reduces seratonin = depression. It's a chemical response to pain before we even begin to factor in the limitations, on life and restrictions etc etc.

    Thinking of you both and hoping the befriending happens, and soon.

    Best wishes

    Shirley

    Xx

  • xxx

  • You said early on in this thread Pat that you had not heard of the befriending service and wondered if it was a new thing. It has been used in my area for at least 15 possibly 20 years. It has been a very valuable resource. Whether it has been available nationwide or only in certain counties I don't know.

    I hope that David can get hooked up with a befriender. It will be a great addition to his life. Yours too Pat. Extra sleep lol

  • Thanks Rib.

    Sleep? Oh be far too busy - manicure, pedicure, massage, hair, meet the girlfriends, meet the boyfriends too, holiday abroad, shopping - oh yes the retail therapy. List is endless.

    Dreams!

    x

  • Retail therapy oh now you are talking my language

  • What do you fancy then Rib?

    Clothes? Toys? Food? Gadgets and gismos? Cars? I'll start with food.

    x

  • I started by eating my diner. I got a "well done Rib. You've eaten more than we expected".

    Cold roast beef boiled pots and green beans. Yummy.

    Now for a trip to Amazon lol

  • Life in the fast lane!

    x

  • Love that song.

  • You are mt friend Rib. I would like to keep it like that so....Please don't sing!

    x

  • I would have you know my voice was very good until lung disease took my breathing away. Choir trained, too. I just play without singing these days.

  • Choir boy in a ruffle and cassock? Sp angelic!

    x

  • now, now. Don't be silly.

  • Rib - I have had a not nice day today for assorted reasons but....you have made me laughed and cheered me up. Thankyou.

    I can even smile again.

    Thank you

    So now I bid you toodly pip and have a giggle on my way

    x

  • That's the way to do it.

  • So pleased they have suggested this.... it's a great idea! We've also found the consultant at the pain clinic understanding and approachable.

  • Oh that's wonderful we haven't got the only one!!

    Hang on to him tightly.

    Pat x

  • No longer have him Pat as there wasn't anything else he could do unfortunately, but he certainly sorted the meds out!

  • They are being cloned at last!

    x

  • This is great news Paton, really hope it helps David and gives you a deserved rest =) It also gives me hope that the pain clinic is the right place to help me. x

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