Tell me your story

Hi All, i’m trying to find out more from both professional carers and people looking after loved ones about how easy it is to deal with certain situations. The main questions i had were around:

  1. What is the hardest part about finding advice either as a professional carer or someone looking after care;
  2. When was the last time that you were looking for advice/support?
  3. Why was it so hard to find relevant/good advice?
  4. Besides contacting this forum what have you done to get advice?
  5. What if anything do you not like about the current ways in which you need to find advice?

If not comfortable with posting here please do send me a direct message. It would truly help me to understand some of my own thoughts of feelings and to know if i alone have them.

1 Is actually getting the right place you contact one place and are told to contact another place you do, you contact the 3rd place who refer you onto a 4th place.
Why didn’t the first place refer me to the 4th place in the first place.
All of whom don’t reply to emails, you telephone and telephone , the helplines are only open so many hours, you leave messages, no one gets back to you.

You then contact the first organisation and tell them all the issues, it is nothing to do with them, you contact the 2nd organisation, it is not their responsibility, they only signpost.

You then try and get advocacy who instead of helping refer you back to the first organisation, yes but I need advocacy to help communicate and complain about the first organisation.

The advocate can’t do that and refers you on to another organisation, but they can only deal with the 2nd organisation and not the first, fine complain about them then.

The second organisation, blames the first organisation, they are simply a charity, limited responsibility.

This is over 4 years by the way , a simple request for help has escalated involving multiple organisations, complaints, advocacy and the Ombudsman.

And I still haven’t got the information I wanted in the first place.

2 today contacted a few organisations, just get the answerphones , don’t reply to messages or the helpline is not open today.

3 Basically all the organisations seem to be signposting organisations not actually ones that will help, they don’t help advice, they pass on email address’s, telephone help lines etc.
There is no one organisation who is actually willing to help and actually advise, they don’t want to take responsibility, don’t have the knowledge or skills I don’t know.

4 I contacted all the relevant advice organisations, social services, the NHS, charitys, anyone and everyone.

5 The places just are not willing to take responsibility, they signpost wrongly, argue with you on the phone, stop answering emails, I have had staff, these are paid staff on a good wage lie to me, telling me this place will help and that place will help.
When really they know they won’t help, say anything to get me off the phone.

There needs to be a lot more joint working by organisations, they are all supposed to be working together but they are not.

There needs to be an assigned named worker who can co ordinate, every time you talk to a different member of staff and often get incorrect information, poorly trained staff , again i don’t know.

There just needs to be an easier way of getting good quality advice and information.

The hardest part of being a carer is the way professionals treat you.
For example, I was asked if I’d like to do a course at the local college?
Yes please, I know they do a sewing course, and sewing is my only hobby.
Sorry, we only fund courses leading to an academic qualification.
I have 10 O levels, 3 A levels, and an Honours degree in Business Studies, and have written a magazine for 20 years, so have good desktop publishing skills. Wasn’t that enough for my forthcoming retirement?
It was obvious from the expression on her face, that I had more qualifications than she did!
Unfortunately, they still wouldn’t let me do the course I wanted!

My son used to weigh 14 stone. Since leaving home, he’s ballooned to 19 stone. When he was home with me for 3 weeks he lost 13lbs in under 3 weeks, always having a plate full of good low calorie food. Sadly, it all went back on in 2 months! Someone from the LD Health Team has recently “advised” his care staff of the diet he needs. My diet for him utterly ignored, she recommended a smaller plate and smaller portions, leaving him perpetually hungry, snacking far more, so now under her “diet” he’s put on 7lbs! Why ignore what I know works, just because I’m a parent? I have cookery qualifications!!
What would you rather have in your lunch box, a salad with lettuce, cucumber tomatoes, celery, tzatziki and feta cheese, or one ham sandwich made with plastic bread and cheap ham??

Londonbound is indeed spot on when he talks about signposting.

The first time this happened to me I didn’t realise I was being sent on an wild goose chase…so I followed all the suggestions only to get back to the beginning again and be no further forward.

The next time someone tried to suggest the same to me I put them straight and told them that I knew what was going on and my time was being wasted.

In answer to your question 5…one of things I have not liked is the absolute lack of knowledge so called professionals have. You get told something different by so many people .

The bit I have not liked is myself feeling I needed to research online to find the answer myself often doing vast amounts of research until 2 am.

This reach did pay off but I shouldn’t have had to do it

And even if you do find the right information getting the local authority to apply the law in your case is usually a struggle .


This is my story in a nutshell. I’m going to answer your questions one by one is that all right or not?
1- I think that one of the hardest bits of caring was when I was trying to find a urologist. I have also experienced a lot of problems finding information on places to visit and activities to do as a family on weekends and learn about educational resources too. I struggled to hire a good childcare provider in addition before my maternity leave ended. Surprisingly I had no trouble finding a national support group for his condition. What will you do with this? I want to know.
2- Yesterday I was reading up on wheelchair sports. There is very little information on that available online however which is a true shame I genuinely believe. One day three years back I was researching wheelchairs again I had a little difficulty there. On the plus side I had a relatively easy time learning all about his disability and what it would actually mean.
3- For me personally, it was not so much about not knowing what was out there. No, I had some difficulty when it came to the right type of help and advice for him and for me and my partner on top of that. Nevertheless I never gave up looking for support. I contacted Shine and also talked to someone at the Bladder and Bowel foundation once regarding his bladder issues. I looked at a list of paediatric clubfoot clinics online and then emailed a local one. Interesting to read other people’s stories and experiences.
4- I was feeling alone in the early days. So I used to search the Web for help and information. I also found talking to other moms and dads who were in the same boat as me helped me feel less sad and more in charge of stuff overall. They empowered me to advocate for my brother and guided me in asking the right questions at his doctor appointments. Knowing that they were constantly there reassured me. Essentially they acted as a sounding board whenever I needed cheering up, respected me and answered my questions. I have done a ton of research on the Internet to dig out answers to my unanswered questions and make some brief notes.
5- Not sure really. This is exactly why I am going private. I honestly feel that he deserves better care. I hope this is useful to you.

I have a son of 34 who’s on a 117 aftercare. He has a learning disability, lower-end autism, temporal lobe epilepsy, post-traumatic stress disorder due to a long term inpatient stay on an A.T.U. He has diabetes.

  1. What is the hardest part about finding advice either as a professional carer or someone looking after care;

The hardest part is not being listened to as an informal carer. When professionals do not want to acknowledge, they will ignore it via the ignoring method (that consists of many professionals as a group, grouping up to refuse to answer any questions to assist). They won’t allow contact unless it is me contacting the access point where the call centre contact staff then always state the person is unavailable (every time) and they say the person will call back and they don’t ever do so. It’s a wild goose chase. Phoning single point access centres, often results in being given phone numbers for contact, that then ring out and cut off and are never answered (social services).

  1. When was the last time that you were looking for advice/support?

For the past 3 and a half years I have been trying to get advice and support. My son’s funding is too low on direct payments. That means I have to fill in the gaps and it’ll soon be under minimum wage which means reducing hours of support needed and having to do more care. He is not getting medication reviews despite seizure activity which has increased.

  1. Why was it so hard to find relevant/good advice?

Because professionals are trained not to acknowledge real-time needs so their department’s which they are employed by, do not have to fund or support fully or properly.

  1. Besides contacting this forum what have you done to get advice?

Tried to get legal aid to find it’s not possible. Got advocates allocated.

  1. What if anything do you not like about the current ways in which you need to find advice?

Being led around in circles, Lied too and advocacy services assisting the phonies (social care staff and health care staff).

Yeah these are some of the horror stories that I have also heard of/experienced. Thank you all for sharing. One thing that came to mind, the moment that you guys get directed to the right place, would you be willing to share your experiences with others? To sort of form a path for others to follow?

What is it you are trying to find out?

The thing is often there isn’t the right place, it just doesn’t exist.

If the right place did exist then there wouldn’t need to be unpaid carers.

Unpaid carers fill in the gaps left by Health and Social services.

And there are big gaps, you could get a double decker bus down some of these gaps.

I am looking after a lady with complex mental illness, long term chronic physical health issues, and other complex issues, where who is the right place to deal with her and who/where is the right place for me to get unpaid carer support?

The Hospital?
The GP?
Social Services?
The Carer Centre?
NHS Mental Health Services?

I am willing to share my story, I have been sent around in circles for 20 years, I have been sent on so many wild Goose chases, I could set up a Goose sanctuary.

We need a “one place that does everything” but it doesn’t exist.

This is absolutely the problem!

A few years ago services were supposed to be coordinated at the point of delivery. A named social worker taking responsibility for organising whatever needed. Now in Hampshire we don’t have named social workers. Each new issue may mean a different SW who hasn’t read the file, doesn’t know the client leaving us to repeat things endlessly. Their role is now “signposting” to others! No up to date detailed care plans. Never finalised. Shambles!

Care plans not finalised …same here!