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Old CP and Ageing factsheet

pantherpanther Posts: 251Member Courageous
Hi I'm hoping someone may be able to help I'm trying to locate the original CP and Ageing factsheet that Scope originally produced that was specifically for people.

I'm wanting to find that factsheet to include with my PIP form as it detailed the issues that someone with cp can face. The current factsheet Scope have on older people have is no good for me as it is too general.

So wish Scope hadn't taken out that CP and Ageing factsheet. 

Replies

  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @alexwhite can you help?
    Scope
    Senior online community officer
  • AlexW_ScopeAlexW_Scope Posts: 204Scope Team Scope community team

    Hi @panther

    Hope this helps with your form.

    Problems people with CP report as they get older

    Whilst there is not a wealth of published scientific evidence on the physical effects of ageing and cerebral palsy, surveys have highlighted some of the problems that people encounter. What is clear is that people with cerebral palsy age in the same way as non-disabled people (primary ageing) but some people with cerebral palsy may also experience secondary ageing effects. These are likely to be the long-term effects of the original impairment.

    Some of the more common problems reported by people in their thirties and forties or, sometimes, a little earlier:

    • Increased levels of pain and discomfort
    • Osteoarthritis (pain and stiffness in the joints)
    • Increase in spasms
    • Increase in contractures (shortening of muscles)
    • Less efficient motor control (body parts involved in movement)
    • Joint problems
    • Tight muscles
    • Gastro-intestinal (digestive system) problems
    • New or increased back pain
    • Emergence of or increase in incontinence
    • Loss of joint flexibility
    • Reduced energy levels and fatigue
    • Some risk factors associated with loss of function

    In many cases the reasons for the emergence of new problems or aggravation of an existing condition is not too difficult to understand.

    Below are some factors that may contribute to secondary ageing effects.

    • Poor wheelchair seating and posture
    • Spinal deformities
    • Contractures
    • Absence of appropriate movement of limbs and joints
    • Persistence with walking when it is increases in difficulty
    • Exhaustion
    • Ending of long-term physical therapy
    • Weight gain
    • Severe learning disability
    • Ignoring the body’s warning signals (such as pain and stiffness)
    • Physical injury
    • Inappropriate orthopaedic surgery
    • Absence of appropriate rehabilitation following surgery

    Poor wheelchair seating and posture may mean that there is inadequate support. This can make existing spinal problems worse, causing pain and discomfort and sometimes loss of function in the limbs. Through lack of appropriate exercise, tight muscles may develop into contractures causing deformities in limbs. Persistence in walking when the legs are adversely affected may cause long-term problems elsewhere, such as arthritis in the joints and pain and discomfort in the back, as other muscles try to compensate for the awkward movement. Physical exhaustion may follow from taking too little rest, resulting in an overall decline in physical and mental functioning.

    Many people with cerebral palsy push themselves to their physical limit and thus have little in reserve. Consequently, recovery can take much longer following an injury or illness and, unless there is a rehabilitation programme following the injury or illness, recovery to previous levels of functioning may be slow.

    Orthopaedic surgery has merit in the treatment of certain aspects of cerebral palsy, such as the prevention of spinal deformities and contractures. However, orthopaedic surgery on people with cerebral palsy requires particular expertise so it is important to consult a surgeon who has some expertise in cp or who has experience in operating on people with various forms of cerebral palsy. Inappropriate procedures may be recommended by surgeons who do not have specialist knowledge of cerebral palsy and again, lack of appropriate rehabilitation following surgery may contribute to delays in recovery, or even deterioration in physical functioning.

    Hope this helps, Alex 

  • pantherpanther Posts: 251Member Courageous
    Thank you Alex that's exactly what I was looking for. Hopefully this will help.
    Is it possible this could be put on the website for those of us with Cp that are going to be going through this process of DLA to PIP

  • AlexW_ScopeAlexW_Scope Posts: 204Scope Team Scope community team
    Hi @panther

    Our CP specialist officer starts on Monday so @speedincaesar will take a look at this when he has started his new role.

    Best wishes, Alex
  • wilkowilko Posts: 1,932Member Disability Gamechanger
    @panther, I hope they read the fact sheet but from what I know is DWP,don't want any information about your condition downloaded ect sent in with your pip form only recent and upto date medical evidence from medical,professionals who have treated you or appointment letters. 
  • pantherpanther Posts: 251Member Courageous
    Thank you @alexwhite it would be so helpful. Was talking to a friend earlier who also has CP and she was as upset as I was that this information had disappeared from your information section. Because like me she would often copy it and attach to her benefit forms.

    For many of us as adults we've had no CP related medical input since we were children and the GP just says try this tablet or increase this one etc, I went to my Drs last year and said I didn't feel my medication was working and she told me that she didn't know what to suggest as she knew very little about cerebral palsy and all she could do was discuss my case in a practise meeting and see if any of the other doctors had any suggestions, they didn't!!! So we are left to battle on.

    We so need a one stop place where we can get specific CP related information and not overall general disability information.

    Best wishes
    Helen
  • pantherpanther Posts: 251Member Courageous
    @wilko I've always submitted additional information with any of my benefit forms as advised from the website www.benefitsandwork.co.uk who have very comprehensive guides on how to fill any of the benefit forms in.

    So I will continue to add additional information with the PIP form. Benefits and works is a good website to access the guides fully you pay a yearly subscription but I used their guides when I did my ESA tribunal and won, again when I had a reassessment of my ESA and continued to be in the support group. Before I decided to try and look for work. And I'll be using their PIP guide to help me fill out the forms when they arrive 
  • wilkowilko Posts: 1,932Member Disability Gamechanger
    @panther, well done you as long as they read the extra information, I fully know about the benefits and work site I am a member but have not needed to use the resources to henance my claim, I was totally honest and presented all my medical Infomation and I must say I had a good and fair acessment for pip and was awarded what I expected to receive.
  • pantherpanther Posts: 251Member Courageous
    @wilko I'm honest on any of my forms but when I haven't had any medical intervention that was CP related since I was a child, have no consultant that I see on a regular basis and a drs surgery who when ever they write anything tell you they don't know what to write as they don't know enough about CP and aren't able to tell them any more than we increased this medication as patient was getting more pain. Then adding additional information is always useful that may help is always useful
  • BeccyJBeccyJ Posts: 59Member Courageous
    edited February 2018

    Hi @panther

    I just wanted to let you know that the document @alexwhite quoted from is actually a PDF file on the Capability Scotland website.  The link is below.  

    http://www.capability-scotland.org.uk/media/57670/ageing_12.pdf

    I’ve got copies of it for the same reason.  It’s the closest thing I have to medical  evidence  of how my mobility and functionality have changed since childhood

    I’ve had a similar experience to you in accessing CP specific treatment and advice.  It basically comes down to no one having any expertise in CP in adults.  It really needs someone to do some co-ordinated research.  Without research there is going to be no scientific evidence on which to build medical treatment and advice.  If Scope isn’t going to spearhead this, who is?

    I thought I’d let you know that I’ve been trying (for nearly a year) to find out what Scope’s standpoint is regarding CP.  Their charitable objects state it exists for “especially those with CP”.  They have a responsibility to us.  The MS society and Arthritis Research UK are just two examples of charities fighting hard for research and better support for those affected by specific conditions.  People with CP don’t have this and, in my opinion, the support we now get from Scope pales in comparison.

    The thread I started which discusses this is linked below.  We’ve had some responses from a director at Scope to some of the points that have been raised.  @emmaliv is trying to get support in this too.  If you feel you can contribute, it’d be great.

    https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp#latest

  • pantherpanther Posts: 251Member Courageous
    @BeccyJ Thanks for the link the full factsheet used to be on Scope's website.

    Scope used to be for people with cerebral palsy. I used to at times do some media interviews for them etc. 

    I'm not sure why Scope decided that it would be better to cover general disability but there are a number of us who were regulars on the forum who dropped off as Scope changed and kind of lost it's way.

    I only came back on today to track down the factsheet then complain a lot when it wasn't there!! Not impressed with how things are like you say we need a voice just for cp and not just one person.

    Will look at the links tomorrow
  • BeccyJBeccyJ Posts: 59Member Courageous
    @panther

    It is so good to know that more and more people are saying the same thing.  The fact that so many of us feel this way about the lack of interest in CP in adults and also Scope’s change of direction is very telling.

    @emmaliv and @forgoodnesssake recently met with Mark Atkinson (Scope CEO) and @quinrah and other Scope representatives and there’s some information about that meeting on the thread I’ve linked to above.  @Bubbles83 and I were both invited too.  Unfortunately we were unable to attend but I am looking forward to seeing what develops.

  • pantherpanther Posts: 251Member Courageous
    @BeccyJ I've just tracked down someone who used to be on here all the time like me but stopped once it became less CP related. She instead set up a facebook group for adults with CP which I have just joined. 

    But if we can get Scope to go back to what they were as the voice for those of us with CP it would be good
  • Bubbles83Bubbles83 Posts: 28Member Connected
    @BeccyJ thanks for tagging me, i was more then annoyed at not being able to attend the meeting, but i've read the minutes and ........ . @panther this is something that has been discussed in great detail (you can find the full thread in the link above) unfortunately scope has made it clear that is is now a pan disability website and there's not much more we can do, as an adult with CP i have made my feelings clear ( along with the rest of us) it's a sad state of affairs.

    Takecare  
  • pantherpanther Posts: 251Member Courageous
    As you've probably seen from one of my earlier comments I'm not impressed been on here since 2010 and during that time there was a really strong core group of people on most evenings. From what I can see most of us have now given up since Scope changed their focus to more general disability. So they lost a wealth of knowledge

  • BeccyJBeccyJ Posts: 59Member Courageous
    @panther thanks for the info
    @Bubbles83 no problem :smile:

    I think people with CP are making their feelings on this issue very clear

    Even the population affected by polio has its own charity (https://britishpolio.org.uk/about-us/what-we-do/) - and polio was eradicated from this country 30 years ago.

    By contrast, CP affects 1 in 400 of the population.  That may even increase now more and more babies are surviving extreme prematurity

    To even consider leaving that proportion of the disabled population without unique representation, and with no voice calling for unique research, is appalling.

    The ball is now most definitely in Scope’s court.  Something needs to change soon.  Either it is the charity “especially” for CP or it isn't.

    A clear and well publicised statement has to be made about Scope’s purpose and intent.

     
  • pantherpanther Posts: 251Member Courageous
    edited February 2018
    @BeccyJ  @Alexwhite I  agree was really disappointed to see how much it had changed from when I was last on here. I started by phoning the helpline as couldn't find what I was looking for. And was told oh we have one adviser that specialises in CP. 1 what good is that to us when there used to be a team. 

    Feel really let down by Scope it feels like they have lost their way or are just giving up on us and considering us unimportant any more
  • BeccyJBeccyJ Posts: 59Member Courageous
    edited February 2018
    @panther

    It does feel very much like that.

    I had a quick look at the stats for CP cases compared to Polio cases

    In 2016 there were 37 reported cases of polio worldwide (Source: World Health Organisation).  

    By contrast it is reported that 1800 babies are diagnosed with CP each year in the UK alone.  Up to 4 in every 1000 live births worldwide.  According to one Australian website a child with CP is born every 15 hours in that country.

    The work of the British Polio Fellowship is extremely worthy and every effort should be made to ensure it is fully eradicated and that those affected by it receive all possible support.  The work of that and any similar organisation should be given whatever resources are still needed.

    Even though there hasn’t been a new UK case since the 1980s there is still a need for an active UK charity supporting those who are affected.

    CP is still a common diagnosis each year, which can have a massive impact on a person’s life.  Like many conditions, there remains no cure.  It does, however, remain the only impairment (that I know of and that anyone I’ve spoken to knows of) that has no major national charity. Scope freely admits that it wants to be known as a pan-disability charity, not a CP charity

    The lack of interest in researching CP throughout the lifespan is a worldwide issue.  The statistics prove it remains a common condition - but for there to be no major national CP charity interested in lobbying for that research to be done is in my opinion unjustifiable.

    Interestingly I once came across a report that postulated that there may be some similarities between Post Polio Syndrome and what is known as Post Impairment Syndrome in CP.

    The British Polio Fellowship’s National Treasurer is quoted on their website as saying:

    ”The British Polio Fellowship has helped provide me with a community and support for what are a very special set of health problems that only people with Polio may understand. I have no doubt that without the help of the charity and the support of many of the members, including my husband, I wouldn’t have felt the confidence to enjoy such a great career.”

    I would be interested to know what she would say if she were told that all of her needs and challenges were actually the same as that of any other disabled person and that all of her needs could be met by a generic pan-disability charity?
  • Bubbles83Bubbles83 Posts: 28Member Connected
    At the risk of being controversial here, the majority of CP cases, mine included where a direct result of failings during the pregnancy and aftercare, i obtained my medical records years ago, and although i was premature, the damage was done because my mother wasn't listened to and monitored, even after i was born catastrophic errors where made, which ultimately resulted in playing a apart in my CP back in the 80's i think they where still learning but there's still being no clear acknowledgement or link between medical negligence and CP.
    they are historic cases like mine being dealt with in solicitors officers all over the world as parents of children and adults alike reorganise that they where some big failings and that CP does simply 'not happen' as my mother was lead to believe, what im try to say in a round about way is maybe that's why companies and charities have distanced  themselves because they don't want to be associated with a mass cover up.
  • Richard_ScopeRichard_Scope Posts: 1,715Administrator Scope community team
    Hi @panther, @BeccyJ and @Bubbles83
    I have read the threads on this subject with interest as all of the issues that have been raised have affected me. By way of introduction, I have just started in the role of Specialist Information Officer - Cerebral Palsy for Scope.
    I am really keen on working with you and others to improve what we offer to people with our disability and their families. 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Jean_OTJean_OT Posts: 532Member Pioneering

    Hi @speedincaesar

    I know you have been a member of this community for a long time but I just wanted to congratulations on your new role!

    If there is anything I can do to assist, please get in touch,

    Jean

     https://community.scope.org.uk/categories/ask-an-occupational-therapist 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • pantherpanther Posts: 251Member Courageous
    Hi @speedincaesar hope you enjoy your new role. And hopefully now we can actually get some support that isn't so general disability related but more specifically CP related.

    As I'm sure if you've read this thread there are many of us that don't like the direction Scope have gone with being more general disability. Those of us with CP are feeling abandoned at a time when we need the specialist help even more than ever with the change overs going on of DLA to PIP as just one example of where we need support.
  • Richard_ScopeRichard_Scope Posts: 1,715Administrator Scope community team
    Hi @panther and @Jean_Scope
    Thank you for the congratulations! I have read the threads and can understand how you and others feel. 
    I am very excited to have opportunity to work with Scope to reinforce what is already on offer.  I hope that we can use our lived experiences to support and direct each other. 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • BeccyJBeccyJ Posts: 59Member Courageous
    edited March 2018
    @speedincaesar I would like to concur with @panther with respect to your new post and offer congratulations.  I do also, however, agree with @panther that having just one advisor where once there was a whole team does seem rather a token gesture, particularly as most, if not all, other health conditions have at least one solely dedicated national charity.  Hopefully this is just a start of better things for those of us with CP.  Only time will tell and I will certainly be following developments with interest.  I hope that I will be able to contribute something at some point in the future and will be in contact as soon as I can.

    @Bubbles83 I’ve certainly never quite understood the rationale behind Scope’s decision to become a pan-disability charity.  I do just about remember when name of The Spastics Society was changed to Scope and, although I probably couldn’t have verbalised exactly the effect it had on me at the time, I would say now that the best way I could explain it now was that it felt like a betrayal.  Like I mentioned in the other thread, other children had on rare occasions used the term “spastic” in my hearing, either directed at me or another child.  As I’ve also said this really only left me bemused.  I knew that spastic that was a simple medical term that adults worthy of my respect used without any hint of unkindness.  I knew it was only a term of abuse in the minds of ignorant people.  I could deal with hearing it used as a “term of abuse” because I knew better than they did.  

    When I heard that my charity had suddenly become afraid of using a simple, universally accepted medical term to describe my disability, that was something that was actually quite hurtful.

    As I’ve grown older I’ve become more and more convinced that the issue around “spastic” is something that Scope should have confronted not walked away from. I could understand changing the name to “CP society” because CP is more than just spasticity.  Reading Mr Atkinson’s recently publicised comments where he stated he was “thankful” Scope didn’t use the name “CP Society” was a real shock.  

    I also think that in becoming a pan-disability charity, Scope failed to see the irony of their decision.  In trying to become the voice of all disabled people, Scope has left people with CP without any unique voice at all.  

    The argument that we don’t need unique representation because CP is a condition that affects everyone differently also puzzles me.  The exact same thing could be said of MS.  In fact, the MS Society does say it:

    “Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged, and this causes a range of symptoms....The specific symptoms that appear depend on which part of your central nervous system has been affected”

    (Source: MS Society website)

    That sounds rather like CP, doesn’t it!  

    But I would be extremely surprised if the MS Society ceased to exist using the argument people with MS didn’t need MS specific research and support and that all of their needs could be met by Scope!

    In view of all of this I look forward to seeing what develops and how well Scope starts listening
  • Richard_ScopeRichard_Scope Posts: 1,715Administrator Scope community team
    edited March 2018
    Hi @BeccyJ 
    Great to read your thoughts and feelings, I can say from my point of view that I was very pleased when Scope changed their name in 1994. I also understood what the word spastic meant but that did not stop it being used as a hurtful slur against me for the majority of my childhood. I am very pleased that it was hardly directed to you. We must have grown up in very different worlds. 
    As I have said before I am keen to work with everybody who has an interest in Cerebral Palsy and I will always listen as will Scope.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • pantherpanther Posts: 251Member Courageous
    @speedincaesar so when are Scope going to listen to that fact that those of us with CP feel left behind, unsuppourted, without a voice etc. When are they going to have more than just you as a specialist information officer?

    As @BeccyJ has said you wouldn't expect to phone one of the other charities and be told oh there is only one person that specialises in your condition. It just shows what little regard Scope have for those of us with CP at a time when we need that support more than ever with the change over from DLA to PIP going on we need more than one person to be able to understand us 
  • BeccyJBeccyJ Posts: 59Member Courageous
    edited March 2018
    @speedincaesar I certainly understand that not everyone will feel the same way and I don’t mean to minimise the impact “spastic” has had on the lives of people with CP. I think I was fortunate with the support I had from my friendship groups and schools.  Very personally speaking I would say I was most affected by the attitude of strangers in the street who would mimic the way I walked, for example - but that was something that would happen before and after Scope’s name change and even into my adulthood.

    However, I certainly don’t want to provoke a debate on this issue.  I respect differing opinion and don’t want it to detract from the issues at hand.  

    I think I’ve made these same points several times over the last few months but the fact is that more and more people affected by CP are saying the same thing about Scope which is very telling.  People like @panther who were once very active on Scope’s behalf but now feel completely sidelined.

    I’ve looked at the websites of several charities.  They offer a whole range of services specifically tailored to the condition with which they are concerned.  As @panther has said, support on this level is something that needs a dedicated team of people.  

    Further to that, that, though, these charities clearly act as advocates for those affected by the relevant condition.  

    There are a range of issues that are common to anyone with a disability and these would obviously benefit from some form of united representation - I would never dispute that.  

    What I do dispute is that people with CP have lost the unique advocate that other disabled people still have in their own condition-specific charities.  

    I also don’t understand why adults with CP should just accept that there are no specialists in their condition.  To me, it is not an excuse to say that, due to the varying nature of the condition, it would be difficult to offer specialist treatment.  
    If I understood you correctly, this was an issue you discussed with @tarakona80 on another thread.  I’d be interested to understand more of your reasoning here.  

    After all, yes, we are all affected in different ways and to different degrees - but we still all managed to get treatment as children.  This is because research has been done into CP in childhood  - therefore medical treatment is available.  It doesn’t matter which form of CP you have or how badly you are affected.  We all had a CP diagnosis as children so we saw a paediatrician with CP expertise who tailored his or her treatment plan to our individual needs.

    So it follows that the only reason there aren’t CP specialists for adults is because no research has been done on which to build medical treatment.  

    CP has been classified as “non progressive”, therefore the received medical wisdom is that no research needs to be done on CP in adults.  No research equals no medical treatments.  

    Anecdotal evidence is increasingly proving that the “non progressive” assumption is a flawed one.  There have been a few studies based on anecdotal evidence.  These studies invariably rather vaguely conclude that CP in adulthood is little understood and research needs to be done.

    Who is calling for that research?  Adults with CP are.  Who is going to to make sure their voices are heard? Given Scope’s current stance on CP and its decision not to involve itself in medical campaigns, the answer has to be “No-one will help adults with CP to get their voices heard.”  That is incredibly sad.

    People with MS are affected in various ways and to various degrees.  They have a charity coordinating research on their behalf

    People have various forms of arthritis (rheumatoid, osteo etc) and can be affected to different degrees - and they have a charity focussed on researching their condition so better treatments can be found.

    Who do people with CP have?  

    No one 


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