What do families want from Scope?

Lola_Scope

We would like to know what families need from Scope so we can plan to meet those needs. Please select from the list of suggestions below and/or add you your own suggestion at the bottom.

Pinks1972

Hello everyone hope Ur all keeping well 😊, but I have moved into a bungalow due to ill health but I can't afford carpet for my living room and hallway, I have lost feelings to both of my legs and feet from the knees down and trying to keep my feet warm is hard and now we going into winter really worries me so how can I get help with this please. Many thanks

Lola_Scope

Hi @Pinks1972,

Thank you for getting in touch. This is not my area of expertise but you can check what support is available on the government’s Help for Households website.

Our website has information about help with gas and electricity bills. 

You can also contact our Disability Energy Support Team on 0808 801 0828 for help managing your energy costs.  

I hope you will be able to stay warm this winter.

Rachel8

How to support my child

https://forum.scope.org.uk/discussion/123014/what-do-families-want-from-scope

would like to meet other children: families.

Lola_Scope

Hi @Rachel8,

Thank you for responding to our poll. Your response will form part of the feedback that informs future plans. Also, by posting here and you have already taken and important step towards networking with other parents.

Feel free to provide some additional information on the main families page. You could perhaps ask the community for recommendations for disability specific groups. There is a lot of knowledge to draw on. You can also Google your “Local Offer”. This should have information about what opportunities are available to you locally. Some areas are better than others but every area should have something to offer and it’s a good place to start as there are often links to other resources. 😊

orangeapple57

Encouraging independence

Unfortunately only one of these options is viable for someone with Eds whilst we suffer many years without a diagnosis. Diagnosis only brings with it vindication as one can only manage deteriorating. In my case I have been denied the only form of treatment as in this County no physiotherapy is available for anyone with a chronic health condition which is counter productive to the condition which deteriorates over time and which can only be reduced or slowed through physiotherapy and management. My daily struggles there for a mount to fighting constantly for independence support and what is awarded by the Equality Act of 2010 however because there are no known establishments as watchdogs for this law, I find myself being a full-time solicitor every single day fighting for equipment grants justice. Therefore my main source of angst is in The pursuit of justice.

vikki66

Other (please state below)

@orangeapple57

Sorry to hear this. There are so many different illnesses and disabilities where sufferers have to exhaust themselves fighting for what is supposedly their rights. It’s awful.

I’m sorry to hear that you have to fight for justice, but I admire your tenacity in doing so. So many people give up.

Stay strong

travisparker

Families need comprehensive support following diagnosis, including resources for managing well-being and behavior. Encouraging independence is also crucial, as it fosters confidence and self-sufficiency in children.

Lola_Scope

Welcome to the community @travisparker and thank you so much for your response it’s much appreciated 🙂

Lola_Scope

Thank you so much to everyone who has responded to our poll so far. We’d be very interested to know any more information you’d like to share. For example, what specific support do feel is needed following diagnosis. Do parents want help supporting their child developmentally, educationally, social or in another area. Would parents also potentially benefit from specific help supporting an LGBTQ+ disabled child?

reachstate

Managing my wellbeing

As we collaborate to advance in our respective fields, I also share a personal challenge. The burden of family debt taken on health grounds has become increasingly overwhelming on me as a young undergrad and constraining my academics, with interest  accruing daily.

Thank you for considering how you can support me during this time through shared resources and networking. I look forward to our continued partnership in building a brighter future, both personally and professionally.

Rachel_Scope

Hi @reachstate. Thanks for your answer. Do you have children yourself or are you referring to debt within your family?

reachstate

Managing my wellbeing

@Rachel_Scope Thank you for your response and concern. I'd like to clarify that the debt I mentioned is related to financial responsibilities I undertook while caring for my sick parent. As a student from a modest background, I faced unexpected expenses that necessitated borrowing temporarily. This debt burden is borne out of familial obligations and the absence of financial support or subsidies.

It'It'It'It's a challenging situation, I appreciate your understanding.

Rachel_Scope

Thanks for clarifying @reachstate. That must have been very difficult for you and it's admirable that you looked after your sick parent.

This particular poll is aimed at those with disabled children, however, your experience has been noted and I will pass it on to the rest of the organisation as something that we could possibly help people with in the future.

reachstate

Managing my wellbeing

@Rachel_Scope iI willI be glad if this leads to helping someone with similar challenge in the future. I empathize with parents caring and loving their children however nature has brought them forth. HaveHave a beautiful evening.

cartha

Finding support following diagnosis

Access to legal advice would be very helpful. I've been in a situation where I needed legal advice, just a lawyer to talk with for an hour or so, but there's been no help where I live. I even offered money at one point but none would help me, and they would not give a reason. I live in the Welsh outback where services in general are not very good, and have been getting worse over the past few years.

onebigvoice

Other (please state below)

Hi everyone,

All the above, are all deserving points and should all be considered, but is this what we expect from the NHS and the government? What we all want and need is to understand is WHY we don't?

It's all because we all lack a voice or a person to present our cause, not to say why we should have this or that, but to say why are you not supplying the help needed by everyone, without having to fight, beg, plead to get help we are entitled to.

Since the pandemic the roles of people and what they should be doing had taken on a different meaning. Where is the "benefit" of being told you need home help for a child or parent after an operation when a Decision Maker can override the financial costs at an assessment by saying that they saw no such problems at the assessment?

All of a sudden you are having another assessment by a receptionist to say you will not get this or that as we have seen people worse off than you who don't get help, so I would not bother.

Make accountability the key issue. Make every assessment signed, by the assessor, show the supporting evidence. Make them understand that this report is written by them, and will be used by others, so that if the content of the report is challenged they need to respond with the details of how they made their decision within the report, and the supporting evidence used. We should not just state that we have used all the evidence available.

All this is in the Charters and Laws surrounding assessments and the decisions made by the DWP and PIP.

We all need to get back what we are entitle to, so my suggestion, is suprize inspections during an assessment, the time scales used to gain access to the system, the time scales taken to rectify the problems and the time scales to revisit those recomendations to the assessment comany and the DWP are really being carried out. Failure to carry out or rectify the issues will result in the contract being reviewed, large fines for both the company and the assessor/decision maker, both from the government, and on a personal level to those affected by that decision.

Sounds harsh? But this is what we are paying for every at every assessment completed by the NHS, yet we are all being called liars as to what we state in a PIP 2 Form. So how or why do we allow them to call the Doctors and Nurses of the NHS Liars when a sick certificate issued by a Doctor is not accepted as the truth from a patient as support.

BRING BACK ACCOUNTABILITY. This would never happen in the NHS as they already have access to your medical history as they write in it for ALL TO SEE. and use every time you attend.

orangeapple57

Encouraging independence

Absolutely "accountability" is key. As a granddaughter of a survivor of the a bomb tests I have seen decades of gaslighting and government misdirects. My mother with chrones would never have got to 12 years of being called a hypercondric and I wouldn't have been left abandoned with a ruptured ectopic breastfeeding when nill by mouth. I wouldn't have been told the pain was in my mind when my merina slipped nor would I have been past from pillar to post trying to resolve it! (Literally spent all day on the loop bus around Thanet!) I've seen the worst the NHS and government have to offer with all the safeguarding and support designed to prevent abuse absent and negligent. As a result I'm blamed for having a moral compass and not suing the NHS to deprive it further of what little resources it has left. I'm hoping that before Xmas I might just resolve the access dfg I waited 8 years for only for cowboys to concrete over my dpc then claim "nothing was wrong with the installation." I'm exhausted with getting the policy and laws implemented! I can't even access my polling station because I need to just get a postal vote instead! It's disgusting!

onebigvoice

Other (please state below)

There is a program on at the moment to contact your Local MP and let them know you are not happy.

Don't wait for someone else to respond. If everyone here did exactly that by simply saying the cost of disability costs more and should be looked at in line with the recent changes to the Social Care Act.

orangeapple57

Encouraging independence

Lovely idea I've been politically lobbying for nearly 12 years now and know if an MP is responsive it's a good idea to get them involved. Also your local councillor can be very helpful.