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Stuck in a catch-22 situation with our daughter

Posted By Qasim

"Stuck in a catch-22 situation with our daughter"

About: Bradford District Care NHS Foundation Trust / Speech and Language

(as a parent/guardian),

With great disappointment I am writing this story to ensure no child is treated the way my daughter has been from the Bradford NHS Speech and Language department.

My daughter has turned 4 and is currently attending pre-school under the 15 hour a week scheme, however her progress has been limited due to the lack of speech and her overall development, displaying signs of autism and additional needs.

The teacher at the nursery identified these concerns and was quick to act by making referrals and had arranged a meeting for me and my wife to go in regarding our daughter's development.

Referrals were made for the following: 

Speech and language referral

Communication and interaction 

Autism Assessment 

We received a visit from the health visitor after waiting endless months - approximately 12-15 months - many calls made to arrange thus whom after seeing my daughter in person had agreed referrals need me be made and has sent off for these as a matter of urgency, and we're still waiting.

The speech and language referral had come through by the language dept at Bradford Hospital which we attended a virtual appointment as parents. As this was a group exercise and powerpoint presentation, we feel we did not find this useful after months of waiting due to the self help tips we have already exhausted and tried all options with our child.

Endless emails and voicemails left the department was back in contact and arranged a Speech and language appointment.

Our overall experience has been very stressful and traumatic due the slow turnaround time and constant throw backs when raising our concerns ranging from the GP, NHS and the local council who subsequently turned down her EHCP plan on the grounds of lack of evidence for treatment.

The above story had been kept brief, but when you have to be a quote unquote advocate for your children's health concerns it does state a lot about the level of care and integrity left in the system, in my view.

The time lost in my daughter's health and development at a young age, we do hope this does not have a detrimental impact on her future.

This story is to parents, as I do not wish anyone go through the trauma and despair we have suffered as a result and will say when it comes to your children keep chasing the relevant services.

I feel like we're stuck in a catch-22 situation with our daughter, only so much positivity and hope you can have before you realise how bad things are .

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Responses

Response from Wali Nazar, Patient Experience and Involvement Manager, Bradford District Care NHS Foundation Trust 2 years ago
Wali Nazar
Patient Experience and Involvement Manager,
Bradford District Care NHS Foundation Trust

Submitted on 23/03/2023 at 14:58
Published on Care Opinion at 15:25

Hi Qasim, my name is Wali Nazar (Naz), I work with the BDCFT Patient Experience and Involvement team.

Thank you for sharing your feedback. I am very sorry to hear that you are not happy with the service you have received after various referrals were made for assessment and to provide support for your daughter.

As an initial response to this story, I have passed on your concerns to our Patient Advice and Complaints department, someone from their team will be in touch to advise how they can support you and hear more about this Care Opinion story that you have shared.

You can contact them directly via email advice.complaints@bdct.nhs.uk or also by telephone call on 01274 251440.

If I can be of any more assistance please email me at involve@bdct.nhs.uk

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Qasim (a parent/guardian)

Hi Naz,

Thank you for your prompt reply on here in regards to my daughters referral with SALT.

My wife had give them speech and language department a call recently and was told there is a 2 years waiting list on referrals bearing in mind we have been waiting since November 2022.

That is a very long time for someone to wait for their child to receive support and treatment and as a result my daughter is suffering and struggling on a daily basis.

The impact it has had us on a parents is indescribable and know the delays to my daughters referrals will have a detrimental impact on her long term health.

These are children who are we are talking about here and something has to change.

Self help tips are great but only so much you can do before clinical intervention is needed

My daughter will start school in September 2023 and we will still be on Waiting lists from both SALT and the children's department at St Lukes hospital for an Autism assessment. This one also has a waiting list of 12 months referral received by them in January 2023 via the health visitor who upon home visit.

I have advocated for my daughters future and health as much as I physically and emotionally can do and will continue do so despite my own health conditions.

We wake up each morning religiously me and my wife rushing for the post checking emails, and our phones in a hope of any signs of progress.

Told by the PALS at NHS leave it with us we will be in touch in a few weeks.

Processes after Processes but no progress not asking for favours just as a fellow tax payer finding it hard to have any faith left in the NHS.

Many thanks

Update posted by Qasim (a parent/guardian)

Hi Naz,

Thank you for your reply on here

I thought I would give it about 6 weeks before posting my further update in relation to my daughters situation.

Unfortunately we are still awaiting for further help for my daughter from the speech and language department and Paediatric help.

If someone can kindly look into this for me please as each day and month that goes by my daughter is suffering and is in desperate need of help and support from the services.

Kind regards,

Update posted by Qasim (a parent/guardian)

Hi,

For everyone has taken time to read this story about my daughter I just want to provide a further update on this.

Even with replies on here are still today been navigated and delegated from personnel and processes but no actual help or support has been provided

Unfortunately we have lost all hope in the NHS internal feedback and complaints team as you seem to get nowhere with them.

A collapsed system with processes after processes but no resolutions or attempts made to resolve.

Response from Wali Nazar, Patient Experience and Involvement Manager, Bradford District Care NHS Foundation Trust 2 years ago
Wali Nazar
Patient Experience and Involvement Manager,
Bradford District Care NHS Foundation Trust

Submitted on 31/05/2023 at 16:12
Published on Care Opinion at 16:17

Hi Qasim

Apologies for any delays in responses to your queries.

I'm very sorry to hear that you have not managed to access the support you had requested for your daughter.

I’m aware PACs are currently involved with this matter and I have asked them to make direct contact with you.

Kind regards

Wali Nazar (Naz)

Patient Experience and Involvement Manager

involve@bdct.nhs.uk

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Qasim (a parent/guardian)

Hi Naz,

we are still awaiting a further speech and language appointment this should have taken place in January but this was not the case also SALT was suppose to visit the school where my daughter started in September 2023 but has not happened as of yet

Still no better off with our daughters care are constantly sent to support groups who offer little or no help.

not happy at all

Response from Wali Nazar, Patient Experience and Involvement Manager, Bradford District Care NHS Foundation Trust about a year and a half ago
Wali Nazar
Patient Experience and Involvement Manager,
Bradford District Care NHS Foundation Trust

Submitted on 01/02/2024 at 10:45
Published on Care Opinion at 16:47

Hi Qasim

I'm really sorry to hear that you have still not managed to access the support for your daughter.

I will contact PACs who are currently involved with this matter and ask them to liaise with you.

Kind regards

Wali Nazar (Naz)

Patient Experience and Involvement Manager

involve@bdct.nhs.uk

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Qasim (a parent/guardian)

Hi Naz,

I hope everyone is well and thank you for passing our concerns on to PAC’s.

Unfortunately nothing much has changed other than more Speech and language self help tips and a few visits from the team to our home only to be told our daughter will be discharged from the department and school will take over from here. I can’t help but feeling a case of passing the book and burden on to school.

With regards to the Paediatric and CDC team over at St Luke’s I can say after consulting with the specialist and team more effort and progress has been made.

We are due a follow up appointment from the Paediatric team later this month as a telephone consultation so we are hoping more support can be provided.

Me and my wife are on the AWARE support group and the support team and rest of the members have been amazing and very welcoming, always on hand to provide a response and share their experiences with fellow members.

Will keep you all posted with our latest progress and do hope it gets better for all parents struggling with excessive wait times and delays, no child should have to suffer or endure that much.

Many thanks.

Response from Wali Nazar, Patient Experience and Involvement Manager, Bradford District Care NHS Foundation Trust 9 months ago
Wali Nazar
Patient Experience and Involvement Manager,
Bradford District Care NHS Foundation Trust

Submitted on 30/09/2024 at 18:02
Published on Care Opinion on 01/10/2024 at 07:56

Hi Qasim,

Many thanks for your feedback and the update about your recent experiences. Its good to hear you have finally received an assessment for your daughter and had some access to support and advice from SALT. Its reassuring to know they are working in collaboration with those involved in the provision of education and healthcare assessments for your daughter

Thank you for your patience and understanding during the time you had to wait to receive the initial SALT assessment for your daughter, we acknowledge how difficult this will have been for everyone concerned, especially your family.

I'm delighted to learn that you have joined the AWARE parent run support group which will help you to navigate the local services who offer care and support that you and your family may benefit from. It is also a great forum for you to share your lived experiences within a network that feeds back to the many providers who are part of the local partnerships within our district. Collectively its your overall experiences that will help improve things in the future.

If you would like to send future updates or feedback about your experiences with SALT or if you require any other support that you feel we can assist you with, please feel free to contact our team directly via email to our team inbox - involve@bdct.nhs.uk

Best Wishes

Wali Nazar (Naz)

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