West Sussex Parent Carer Forum


We are an independent charity run mostly by parent volunteers; we represent parent/carer views to various organisations and professional bodies to improve county/health/social care services for disabled children, young people and their families.

What we do:

  • Represent the views and lived experiences of parents/carers to the appropriate bodies within health, education and social care.
  • Provide advice and support parents through training, conferences and roadshows to empower you when working with practitioners who are supporting your child/young person.
  • Provide holistic information and signpost you to relevant services including health, education, social care and voluntary organisations.
  • Our phone is manned Mon – Fri, if you leave a message, your call will be returned. Become a member and receive our email bulletins on a regular basis. We use our Facebook page to post information and local/national updates.

Our users say:

“Having attended the Making your Voice Heard’ training I felt more confident in speaking to professionals about my son’s needs, thank you”

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Age Range: 0–25

Wheelchair Accessible?

Free to use?

Contact Details

01903 726 188


Dove Lodge,
49 Beach Road,
BN17 5JG

Upcoming Events

Tuesday, 28 March 2023
To Be Confirmed

Expert Parent Programme ~ Complex Health Needs

This is a two-part workshop, you must be able to attend both dates. More information about this event will be posted as soon as possible. To receive Booking Forms to our events you MUST be signed up to our Parent Carer mailing List. To sign up, simply click the blue ‘Sign-Up’ button at the top of our Facebook page and complete the short form. You can unsubscribe at any time. ...
Tuesday, 28 March 2023
Online via Zoom

Expert Parent Programme Workshop - Complex...

Expert Parent Programme workshop for Parent Carers of children with Complex Health needs. This workshop is for parents and carers whose children have medically Complex Health needs (0-25), who more than likely receive health and care from many different services and places. Topics covered include: ~An understanding of person-centred approaches ~Being clear on your child’s rights in the NHS and ta...
Tuesday, 9 May 2023

Talking Heads ~ Parent Carer Financial Toolkit...

Join Rhiannon Gogh, (FPFS) of Planit Future Financial Limited to understand the ‘Financial Need to Knows’ for parent carers of a vulnerable child. ️ Rhiannon, a parent carer herself, has worked with parent carers of children and young people with additional or complex needs for many years and recognises that there is a struggle to find credible, straightforward advice on how to provide for the fut...


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  • Posted by katherine.turner on 24 Jul 19 09:07


    I saw your email below and this is the first time I have had time to email back as I wanted to send a message.

    I recognised the photo below and met Katherine recently at the event at K2 in Crawley. She is an inspiration and a true asset to your team. At that time I really needed someone to give me encouragement and make me feel I am not alone and there is a help out there. My son is 4 years old and we got diagnosis of autism and language impairment just under a year ago. After finalising his EHCP I found everything overwhelming and was struggling to even look at the DLA form I started months ago. I plucked up the courage to go on my own to K2 and nearly wimped out as I am shy and am still didn't want to burst into tears in from of anyone.

    Katherine was so friendly, kind, and listened and keep me talking and gave me so much advice about things I had never even heard of. She gave me a bit of my confidence back and the kick up the rear to get things done. I have now completed my DLA form and am about to send it off. I just wanted to say Katherine is an amazing lady and I owe it to her. So I wanted to send a huge thank you to her for helping me.

    Kind regards

    Pauline Burley

  • Posted by katherine.turner on 24 Jul 19 09:06

    Hi Katherine

    I saw you at Manor Green autism day recently and thanked you for helping me when I was not in a very confident place when I met you for the first time at K2.

    I have found my review I emailed to West Sussex Parent Carer Forum back in February when I saw your photo in the news letter. As promised I am sending you a copy, sorry for the delay!

    I am happy to say I now have DLA middle rate and have just been awarded a £300 parent carer grant so I can actually treat myself. I am in a much better place now emotionally and feel more confident that I have support around me and its was all thanks to you and West Sussex Parent Carer Forum.

    Thank you ! xx

    Kind regards

    Pauline Burley

  • Posted by office on 02 Jul 19 11:09

    Facebook post from a parent carer on 20th June 2019: I've just attended the Coffee Cake Information and Networking event at Billingshurst. I was so impressed with the helpfulness and friendliness of the WSPCF team. Always happy to help, chat, listen and understand. It truly made me feel more hopeful and I can't thank you enough for that and everything else you do for parent carers. And the cake was good too :)

  • Posted by office on 02 Jul 19 11:07

    Facebook post from a parent carer on 20th June 2019: I've just spoken to a WONDERFUL lady called Pam over the phone who gave me all the information that I needed. She was very friendly and very helpful.

  • Posted by katherine.turner on 26 Apr 19 13:05

    Anon - Very Welcoming event - even got a dance :) - saw who I needed to see and the Parent Reps were really helpful in pointing out who and what to see.

  • Posted by katherine.turner on 26 Apr 19 13:04

    Feedback from parent carers following the Coffee Cake and Networking event at The Phoenix Centre in Bognor Regis - M. Learly TRS - Brilliant event, so informative friendly and appropriate.

  • Posted by katherine.turner on 27 Mar 19 14:22

    Just a quick email to say that I thought the event last night was exceptionally well attended and what a buzz! Also, I thought it was a very good venue. Having said that – your events are always good!

    Reviewed by Gennie (Miller) : Home from Home Care

  • Posted by katherine.turner on 25 Mar 19 16:17

    Wendy Darley reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 -
    Great to finally chat with Paul Morrison to discuss updating my son’s EHCP. The two ladies from the Carers Health Team were great too. It would be nice to have met someone from a care agency to discuss provision of respite when using direct payments

  • Posted by katherine.turner on 25 Mar 19 16:16

    Sarah Wilkins reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 - Useful evening - lots of information- thank you to Chichester College for reassuring about a future. Work Aid Aldingbourne were helpful and gave contact details Apuldram helped too. Thanks to Facebook for telling me about the event.

  • Posted by katherine.turner on 25 Mar 19 16:16

    Claire Patterson reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 - What wonderful ladies at the WSPCF!! It was great to chat with the parent carers forum and feel listened too. WSCC were really helpful and took on board my concerns regarding lack of support and funding within West Sussex. A very informative evening

  • Posted by katherine.turner on 25 Mar 19 16:16

    Tina Hall reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 - An informative and interesting evening. Felt is was good use of my time. Location was a fairly central one. Have collected leaflets for reading later. Lovely refreshments laid on and pleased to see Gluten Free cakes available as well.

  • Posted by katherine.turner on 25 Mar 19 16:15

    Paula Wilkinson reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 - Good information from services that attended, however the event also highlights the lack of provision with in West Sussex.

  • Posted by katherine.turner on 25 Mar 19 16:15

    Amy Hovil reviews WSPCF First Steps to Adulthood Event @ Chichester College 18/03/19 - An informative event - found information on potential provision for my nearly 17 year old son.. Thank you

  • Posted by localoffer on 30 Oct 17 11:15

    Feedback following a Coffee, Cake and Info Networking Event

    "Thank you Lindsey, its your and Nicky’s energy and enthusiasm that makes a big difference to all these WSCC events, in our experience better than any other SE county. "

  • Posted by localoffer on 14 Mar 17 08:20

    "Thanks for a really informative evening seminar on Wills and Trusts last month. The speaker was great, making what could be a very dry subject into a very interesting talk. It has motivated me and my husband to get our wills and a trust sorted out at long last, now that we know what we need to do. I'd highly recommend this seminar to other parents as it makes sense of a difficult subject." Feedback left via the Feedback button and then posted by the Local Offer Officer.

    West Sussex Parent Carer Forum replied on on 14 Mar 14:41
    Thank you so much for taking the time to let us know how much this seminar was of help to you and also recommending it to other parents. We will pass on your comment to the speaker about how interesting the presentation was despite this being, as you describe, a dry subject! It is so important for all parents to make a will but for many SEND parents there is often the added need/benefit to set up a trust for their child(ren). We will make a decision as to whether we need to run another session in the future.
  • Posted by localoffer on 01 Feb 17 08:57

    "Really enjoyed the event today" - comment in relation to the Expert Parent Programme and Child & Adolescent Mental Health Services (CAMHS): Workshop. Feedback left via the feedback button and then posted by the Local Offer Officer.

    West Sussex Parent Carer Forum replied on on 14 Mar 14:52
    We really appreciate you providing this feedback. It's great to know that you enjoyed the event - we also hope you found it provided you with useful information and tips on how to interact with the professionals within this part of the health system.
  • Posted by localoffer on 01 Feb 17 08:56

    "A big Thank You to the Forum for arranging Anna Gill to deliver the Expert Parent Programme on CAHMS. I thought I was fairly knowledgeable but I learnt so much from the course to help me support my son better. The NHS is so complicated even more so in our area as we have 3 Clinical Commissioning Groups, you need to understand the systems if you are going to get the most out of them." This feedback has been left via the feedback button and then posted by the Local Offer Officer.

    West Sussex Parent Carer Forum replied on on 14 Mar 14:46
    We are delighted to know you found this course useful in enabling you to support your son better. As a large county West Sussex is more complicated than our smaller neighbour - Brighton & Hove that has just one Clinical Commissioning Group (CCG) - the people who buy health services. You are absolutely right in your comment that you need to understand the system in order to get the best our of it. The Forum will be working with the Local Offer Officer and CAHMS to improve their information on the Local Offer. We will also be looking to run this course again at some point.
  • Posted by localoffer on 24 Jan 17 18:46

    "I just wanted to say how much I enjoyed meeting and getting to know the other Local Offer Ambassadors over dinner at Strada. I'm so pleased to be a Local Offer Ambassador, as the Local Offer provides a wealth of information on services and events for families who have children or young adults with additional needs." (Comment left via the Feedback plugin 5th of May, 2016)

    West Sussex Parent Carer Forum replied on on 14 Mar 14:52
    It is great that we have such a wonderful team of parents who are out and about in the County signposting other parents to the Local Offer and providing valuable feedback on the site, the services and the information. The Forum will be arranging another get together for Local Offer Ambassadors during this year.
  • Posted by chris.hughes on 21 Oct 16 13:20

    I attended the WSPCF at Worthing Rugby Club and made several very useful connections with other services, and especially met parents who are interested in our service but had not heard of us before.

    Great Forum. Cheers, Chris from Oak Community Project.

    West Sussex Parent Carer Forum replied on on 14 Mar 14:51
    Just want to say a big 'Thank You' to you Chris for taking the time to leave a comment on our summary card. It's great to know that our work is appreciated not just by parent carers across the county but by service providers like yourself. We look forward to welcoming you to another of our events in the near future.
  • Posted by localoffer on 21 Oct 16 13:16

    I would like to thank the forum for organising the Coffee, Cake Info and Networking Events. The fact they are regular sessions enables connections to be formed. Now having attended several of the events it means that there are some new and old faces but we are able to continue effectively networking together with everyone, parents and services providers. It puts a face to a name and further context to services! It's also an invaluable event for myself working on the Local Offer website. Charlotte

    West Sussex Parent Carer Forum replied on on 14 Mar 15:02
    Charlotte we are so pleased you have commented on these sessions as it give us, the Forum, the opportunity to thank you publicly for being such a wonderful asset for our Local Offer. Your dedication and commitment is ensuring our Local Offer continues to develop and through your work on the Roadshows and webinars we are spreading the word to parents and professionals about what it is and how it can support the SEND community. We feel we made the right decision to stop holding an annual PACE event and to instead run these sessions throughout the year, spreading them across the county. We hope that by doing so we continue to reach out to many more parents that need help in understanding the SEND world.
  • Posted by catmcd1970 on 10 May 16 12:48

    I also attended the expert parents course at Haskins in Littlehampton. It was a very informative course and I would definitely recommend it to other parents. Anna was very knowledgeable and delivered the course very effectively. Oh and lunch was lovely. Thank you Caitriona McDermott. Ps. Thank you Nikki for helping me get on the course xx

    West Sussex Parent Carer Forum replied on on 11 May 14:12
    Catriona we are delighted you found this course so useful. West Sussex Parent Carer Forum was one of only a small number of Forums selected by Contact a Family to work on health issues this year. It's great to have this feedback to share it with them, and hopefully make the case for further training! As always the wonderful Niki proves what a 'diamond' she is!!
  • Posted by rachjanefrog on 03 May 16 19:48

    Today I was lucky enough to take part in the Expert Parent Programme which was organised by the WSPCF. It was very informative in gaining a better idea on how the health system works. Anna also gave us many skills like being more confident and assertive in how to positively ask for what we require to enable our children. Anna was also very knowledgeable about the law and the rights for both parents and their young people. It was an amazing and inspirational workshop. Thank you Anna and WSPCF.

    West Sussex Parent Carer Forum replied on on 05 May 09:38
    Rachel, it's good to know that this programme provided you, and hopefully the other parents attending, with a better understanding of the health system and to further your skills on how to get the best out of our NHS. We will pass on your comments to Anna who knows, perhaps we may even able to persuade her to return for another presentation! Thank you for providing this useful feedback, it's much appreciated.
  • Posted by joanna.earl on 03 May 16 16:26

    Rachel Froggatt from the Parent Carer Forum spoke at the West Sussex County Council SEND Strategy Launch Event on the 21st April.

    The Cabinet Members (Stephen Hillier and Richard Burrett) fed back that they thought that her presentation was excellent and passed on their thanks and congratulations.

    WSCC also received really positive feedback from other attendees, who felt that Rachel was both inspirational and funny!

    Thanks very much for agreeing to speak at our event.

    West Sussex Parent Carer Forum replied on on 03 May 18:40
    Jo, we are delighted Rachel's presentation was so well received by the audience; we passionately believe that sharing personal stories enables professionals and members to have their own 'eureka' moment in understanding the challenges of raising a child/young person with SEND and the delight we experience when they succeed. Thank you so much for taking the time to provide this feedback. We are very proud of Rachel for taking to the stage to share her story and for doing it so well.
  • Posted by nicolah1987 on 28 Apr 16 20:39

    Katherine at wspcf was really helpful she came into my sons school palatine primary was very friendly and helpful she told me about other services that I didn't know about and was very helpful. The coffee and cake morning at busted community centre was really good found out lots of good information about different services that are available locally for my son to access. Also she told me about the carer grant that I can recieve which is really good as can have some time for me and don't have the kids with me so can relax thankyou for all your help! Nicola Hathway

    West Sussex Parent Carer Forum replied on on 29 Apr 18:34
    Nicola, many thanks for taking the time to provide us with this feedback. Katherine is a mine of useful information and it's good to hear that you will be making an application for the Carer Grant to support you with your own well being. We are delighted that you found the Coffee, Cake, Info and Networking event so useful, the next one is on 20th July and is in Billingshurst perhaps we will see you there too?
  • Posted by localoffer on 20 Apr 16 15:56

    "Spoke to a lady called Nikki,she made me feel hope and relief that there are people to help me get what's best for my son which so far has been such a battle!Thank you for being there and providing this service."

    Comment posted by the Local Offer Officer as the comment was left via the 'feedback' button.

    West Sussex Parent Carer Forum replied on on 21 Apr 12:25
    Thank you for such positive feedback, we know what a wonderful first point of contact Niki is for parents. Everyone who works/volunteers for the Forum is a parent carer so we can empathize with how you are feeling as well as signpost you to services that may be of benefit to you. If you left this feedback and then see this reply, please do contact Charlotte Smith our Local Offer Officer so she can talk you through how to leave a comment directly with us. This is really easy but you do need to have set up an account for yourself. We really appreciate you taking the time to leave this comment.
  • Posted by jsands on 19 Apr 16 09:33

    I work as a Learning Mentor in several different schools across West Sussex and after attending the training delivered by Inclusive Solutions on Creating Circles of Friends I have been inspired to try it in two of my schools to support two different boys with Autism. So far I am finding it an amazing tool, the response from the other children is so rewarding and their attitudes so mature and lovely that I feel that the gentle coaxing into 'simply giving it a go' from Colin's training was the incentive I needed.....I really just wanted to say thank you for laying on the brilliant training and please don't stop there ! I have many resources and options to try in my role as a Learning Mentor when I am supporting a child, this one has just gone to the top of the list!!

    West Sussex Parent Carer Forum replied on on 29 Apr 18:39
    Jo, we are delighted to hear that you were so inspired by this course and more importantly of the success you have had in creating Circles of Friends for not just one, but two children. We agree that this is not just about improving the lives of those particular children but also engaging the other children in the school. Your experience shows just how mature, caring and inclusive children can be when supported appropriately. We hope you will continue to act as an advocate and practitioner for this tool. Thank you so much for sharing your experience on the Local Offer we hope it will encourage others who attended the training to 'Give it a Go'!!
  • Posted by ssutton on 12 Oct 15 20:01

    Thank you WSPCF for allowing Amy and I to join some of the parents at Foxes Hotel this last weekend. Maureen and her staff were brilliant and really helpful with Amy (thank you too Sarah and Grainne!!). It really did feel like a mini holiday as Minehead is such a sweet town, nice seaside walks and I enjoyed my cream tea in the High Street just watching the world go by - well mainly blokes in Welsh rugby t-shirts!! Thank you again for a great weekend!

    West Sussex Parent Carer Forum replied on on 30 Mar 14:44
    Shirley, we are so pleased you enjoyed your visit to Foxes Hotel (9 - 10th October) and that we were able to provide you with some respite over the weekend. It was such an amazing place! (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by carriesanter on 06 Jun 15 15:59

    I attended another valuable workshop facilitated by WSPCF on tuesday 5th june; Person centred planning, made me stop and re assess how we view our daughters needs. Thanks WSPCF X

    West Sussex Parent Carer Forum replied on on 30 Mar 14:49
    Carrie, once again our thanks for taking the time to share your experience on the recent person centred planning. It's great to know that it has helped you to further support your daughter. (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by giddych on 05 Jun 15 21:02

    On Tuesday, I went to the Person Centred Planning workshop that was organised by WSPCF. It was so refreshing to be asked to think positively about my child and what his strengths and aims are, rather than thinking of all the negatives. I feel Person Centred Planning would be useful for every child but particularly for those with additional needs. I wish my son, who is 18 and on the autistic spectrum, had been offered Person Centred Planning before we went through the rigmarole of getting him a Statement. Thank you WSPCF!

    West Sussex Parent Carer Forum replied on on 30 Mar 14:46
    Chris, thank you for your comments, we are delighted that the overwhelming parent carer feedback on this training has been so positive. The day did provide us with an opportunity to view our child/young person through a different window and in so doing feel more positive about their future and ours! We hope to fund further training to share this valuable 'tool' with more parent carers. (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by duffy01 on 05 Jun 15 10:27

    I first went to a PCAG about 3 weeks after my little one was identified by school as having additional needs. I was so nervous, but everyone was lovely. Since then we have gone through the diagnostic process and WSPCF has been very handy with the training and information they provide. PACE- was instrumental in me finding out what help was available and to gently find my way. PCAG- I've always found them to be really helpful especially the topics and the people from the county that come. Out of the box- really helpful and even made me think of better ways we can use our personal budget. Making your voice heard- really helpful and a great insight into how things work. Person centred planning- that was just brilliant- Very thought provoking and really turns the medical model on its head and gives a bigger picture for our young people.

    WSFCF has helped me stay informed, offered excellent training, and are a very supportive bunch of parent carers :-)

    West Sussex Parent Carer Forum replied on on 30 Mar 14:45
    Trish, thank you for sharing your many and varied experiences of the work the Forum does. Our aim is to empower parent carers to shape services in West Sussex whether that be in supporting their own child/young person or in stepping up to take on a wider role as a parent representative. It is great for us all to know you feel we have been there for you; it's one of the many reasons we all volunteer. (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by tim.h.finch on 03 Jun 15 01:01

    Yesterday (June 2nd, 2014), my wife and I had the good fortune to attend the Person Centred Planning event in Horsham, arranged by West Sussex Parent Carers Forum (WSPCF) and presented by Inclusive Solutions. Our attention was drawn to this by the WSCC Short Breaks Team and also by QEII, my step-son's school.

    My step-son has cerebral palsy and associated learning difficulties. One of the problems we find as parent carers is that we are consistently failing to find solutions to some of the key problems he faces that are going to directly affect his future, despite excellent support from his school / college, the efforts of WSCC service providers, and facilities offered by other independent / charitable service providers within the local community.

    We found the Person Centred Planning presentation inspirational and left the session bubbling with hope of finding solutions to those key problems using this process. We are under no illusion that the journey will be easy, but are able to feel some optimism that, with appropriately directed effort, changes for the better can be brought about.

    We'd like to thank Colin and Derek, of Inclusive Solutions, for the excellence of the programme. It was all made so easy to understand and, despite the serious nature of the content, chock full of good humour and good will.

    Finally a special thanks to WSPCF for making this presentation happen! Great organisation and a really warm welcome.

    West Sussex Parent Carer Forum replied on on 30 Mar 14:40
    Tim, thank you for sharing your experience of the person centred planning yesterday; we will pass on your feedback to Colin and Derek. We are so pleased you found the training inspirational, we did too! We hope there will be an opportunity to bring the team back to West Sussex to inspire more parents and professionals in this approach. You are right in stating that the path will not be easy but with different tools the future seems brighter for all our children/young people. (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by karenpark on 02 Jun 15 22:13

    I went on an inspirational training course today organised by West Sussex Parent Carer Forum, led by Inclusive Solutions. We were welcomed with smiling faces & a tea or coffee was brought to us, such a treat. We learnt about Person Centred Planning, focusing on ordinary needs not special needs, and how we could use the MAPS creative planning tool, to create a shared vision of a positive future, a good life for individuals and families. Every parent and every professional who works with children would benefit from attending this course. Inclusive solutions have lots of great information on their website: http://inclusive-solutions.com/maps/ Thank you so much for organising this training.

    West Sussex Parent Carer Forum replied on on 30 Mar 14:40
    Karen, thank you so much for taking the time to share your experience on Tuesday's person centred planning training, we are delighted that you found the session helpful and are grateful to you for sharing the link to Inclusive Solutions website. We consider ourselves to be a welcoming and friendly team and so it is great to know that we achieved that for you on Tuesday! (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
  • Posted by carriesanter on 13 May 15 05:58

    We have been experiencing SEN&D for several years now but only officially diagnosed within the last year. WSPCF have been there for us for the last 2 years and have always made us feel welcome and acknowledged. This vital organisation works because parent carers are using their experiences to forge the path onwards. At times throughout our experience, I often felt like I was an imposter, because our daughter did not have a diagnosis and I couldnt possibly have validity to my experience. I couldnt be more wrong. Lots of children and adults dont have a diagnosis but that shouldnt prevent parent carers from accessing vital support & Im pleased to say that WSPCF have been a shining light in a very dark tunnel. I have attended several informative workshops and I now feel ready and willing to become involved and make a difference. Your experiences can help make a difference.

    West Sussex Parent Carer Forum replied on on 30 Mar 14:39
    Carrie it's good to know the difference the Forum is making to you and that the workshops have proved helpful. Thank you for taking the time to post on the Local Offer we appreciate it. (This response has been reposted due improvements on our Local Offer and is not showing the real response time)
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