To clarify my request for your help, I am looking for any negative experiences with any part of healthcare services or recommendations for changes in the NHS. All information will be considered confidential in my study. I am just looking to gain some insight into the concerns of those suffering from cerebral palsy or their family and friends with the NHS system.

Some questions to ask yourself include:
Have any concerns not been met, has the system overlooked something required to help or treat those with disabilities? Did you have difficulty finding the appropriate specialists, were the facilities fully accessable to everyone, were the instructions clear?

I hope that some of these questions will remind you of experiences that you wish to share with me. With this study, I hope to highlight areas that need attention in order to meet the needs of all disadvantaged and elderly patients.

Thank you in advance for your help, it is truly appreciated!

Carolyn

What a can of worms you could have opened. When we go for Braces/splints You get a mould made of them they are sent away usually have to wait about a month for these to come back. Then you find they don't fit propely so they have to be altered (heated and ajusted) they still hurt so they say just try them and come back if there is a problem. If you can get an ap. My daughters Brace Cut her leg when she was smaller I phoned for a ap to be given one for 6 wks time :-( No good. Sometimes when you get the braces and the ap they forget to order shoes so you have to go back for them.Lots of Wasted appointments are annoying and time consuming.The braces are uncomfortable and hard If your child can walk a little or ride a Trike they nip. Do they look at them or try to make things better? NO It seems to me One size/Type fits all You just have to try to manage. Then you get Contradicting advice so you don't know what to do. I thought the patient was suppose to come first NOT feel like a Bone in the middle. Thanks for my Rant Won't change nothing Can live in Hope though.

Thank you for your response. I will keep it in mind that booking and acheiving appointments is quite difficult and confusing, and wait times are unacceptable. I apologize that I cannot make recommendations for changes to the development of products such as the brace. All the best. - Carolyn

Hi Carolyn, Firstly, can I thank you for even realising that there is a problem within the NHS? There are actually MANY problems. I can totally agree with what has been said about wasted appointments regarding shoes and splints etc. I get the impression from my orthotist that he is doing his job by measuring me up and ordering new boots. The fact that pair after pair don't fit, dosen't seem to interest him at all. The fact that I have a 45 min trip each way to the hospital, for myself and my husband as I cannot take myself, added to the fact that because of ill fitting footwear I am unable to walk most of the time, not to mention the total waste of NHS funds on boots which are just thrown away as he orders the next pair, does not seem to register with him.

Another bone of contention of mine is the total lack of support for Adults with CP. As a child with CP I was given full physio and orthopaedic support throughout school. At the age of 16, I left school and was told by my consultant and physio that there was nothing more they could do to help now that I was no longer a child. I have managed without support from anyone for the last 32 years but now in my late 40's I am struggling. Poor fitting footwear and wear and tear on my joints is telling on me now, and I have had a fight on my hands to get any kind of support from a physio. I have, after begging my GP for an appointment with an orthopaedic consultant who specialises in CP, had a full analysis, and although he told me there is nothing he can do to help, he has referred me to a Neuro Physio and she has been a great help. At last, I feel like I am not banging my head against a wall. However, the most helpful thing she has come up with was Hydrotherapy, that helped a lot, but unfortunately, she could only offer me 6 sessions as there is a long waiting list. I am now back on the waiting list for a further 6 sessions!

I hope this helps in you study, good luck with your course.

Take care

Karen

Hello,

Thank you for your response. I am sorry to hear about your lack of support as an adult. I will keep it in mind that you find the appointment process not as efficient as you believe it should be. If you have faced any physical issues in regards to your appointments, please feel free to leave a comment about it.

I look forward to hearing from anyone about the obstacles they face when dealing with appointments; be it a physical, communicative, or cognative obstacle.

Thank you again. I appreciate all feedback.

Carolyn

Hi,
I don't know if you still need information, but this is an area that is extremely lacking. When it is was first recognised that our daughter was developmentally delayed at a routine check-up for prematurity, I was told she had this delay, told she probably had brain damage and that I would recieve an appt to take her to Community paediatrician. My husband and I were then left for three months before I finally broke down at our GP surgery and the health visitor was involved and managed to arrange an appt. In all that time we were not contacted by anyone, we were shell shocked by this news and could not understand how we could be left with no support, not even a phonecall to see how we were doing, or if we had any questions, and no appt.

Yes I am most definitely still looking for your comments in regards to patient experiences within NHS services.

I'm sorry to hear about the lack of communication. It seems that is relative to the doctor you went to see, however I have heard of this problem in other cases as well.

Thank you for your contribution.

Carolyn

hi there,

to be honest i have had excellent experiences and then the complete opposite with my treatment.

The worst bit is different consultants say i have different types of cerebral palsy, luckily i have a great consultant Mr Martin Garagan at the BRI, and he has turned my negative experiences around.

However my main issue isn't really with the NHS but local health boards. i live in south wales and because of this the local health board keeps refusing to fund my tgreatment in Bristol which leads to many telephone calls from my gp and Mr gargan to get the funding for procedures i need.
i think there must be a better system with regards to funding across different Health boards, as i cannot help that my specialist is not in my district.

The other issue i found is the physio deprtment at the adult centre did not know how to deal with me and my therapy requirements as they are used to older people with arthritis and people who only need short term treatment, as a result i see a physio on a private basis which costs me £45 every 2 weeks and i have been paying this for roughly 8 years now, it is an expense i cannot really afford.

i hope this helps.

Kat

Thank you for your insight into the miscommunication and lack of experience in funding between local health boards. It is especially upsetting as you cannot receive the help you need in your own district.

I have heard previously that therapy clinics are often unprepared for certain patients they receive. The best way to improve this is to educate them on your needs, or investigate for therapy clinics that specialize with a patient such as yourself. Sometimes your GP may be able to direct you in this regard.

Thank you very much for your input. I wish you all the best.

Hi Carolyn,

If you are still collecting information these are some of our more up to date experiences.

I live in Lincolnshire and we are experiencing problems getting appointments with Community Paediatricians. If our daughter is supposed to be reviewed 6 monthly it is often 8 months before she is seen. The situation has got so bad that at her last review the Consultant actually told us that she needed to be seen in 6 months, but they would have to be put down for 3 monthly reviews or she would likely not be seen for 9-10 months. She has also been seen by 5 Community Paediatricians in 3yrs as none of them stay in post very long, this has lead to tests being ordered but results not being recieved and her still not having a care plan in place. We have been told that this is a National problem (obviously I don't know how true that is) so it is not worth being referred out of area.
It also seems due to funding issues that doctors are reluctant to refer for scans without second opinions. Our daughter has been assessed for swallowing difficulties by a Consultant and SALT, who have agreed their is a high possibility of aspiration, but she now has to be assessed by another consultant before they will do the scan. In the meantime she is left suffering chest infections and unable to eat. The SALT confirmed that previously they would have referred her for scan by this stage.

I'm sorry to hear about these issues with booking appointments. I know there are some new measures being implemented, such as Choose & Book, to try and alleviate problems such as what you describe. My wishes go out to you and your family in this situation.

Also, I have developed a Public Opinion survey that I hope you would be willing to complete. Anyone who has ever attended any health care appointment is encouraged to participate. Please see the link below. The survey should only take a few minutes to complete, and no information is recorded that will be able to personally identify you.

I hope that you will encourage others to participate as well. Thank you.

http://www-edc.eng.cam.ac.uk/~cb651/PublicSurvey.html

Carolyn

Hello Carolyn

I think the major problem adults with CP have with NHS services is that there aren't any.
My daughter is 34. Up to the age of 18, she saw a neurologist at Great Ormond Street, received physio and speech therapy at school, and had access to any other service she might need through one of those routes. As an adult, services have been pretty well non-existent.

Hi Lizzie,

I'm sorry to hear that. I will make a note that often specialized services are not available to those who need it once they become an adult.

Please feel free to fill out my survey in the link above for both yourself and/or your daughter. The data will help to support making the current NHS services as accessible as possible for all patients.

I appreciate your feedback. Thank you.

Carolyn