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Diana Finch, Chief Executive of Swindon Carers Centre welcome and introduced the panel.
The panel members explained a little bit about their roles.
Could you explain what has happened to personal care in the GWH and all NHS hospitals?
Example: When my wife, who is terminally ill with COPD, was last in hospital ( she was put in the day surgery), she asked to use the loo and was told it was an inappropriate moment.
Donna Bosson: This was an awful story and she was very sorry that was Andrew’s experience. She imagined there were no beds in the main hospital which is why the day surgery was open. (Policy is to admit everyone rather than diverting them to other hospitals). Donna said she was happy to investigate why Andrew’s wife was admitted there. Personal care is essential and the hospital is always looking to see how it can improve.
Liz Daly: Very sorry to hear about that experience and she will investigate further. Liz talked about the Productive Ward Programme which is going back to basics – Call Bells being answered quickly etc. She will take these comments on board.
Another carer added that her husband had had a stroke and was treated on Saturn Ward and his treatment was so appalling the family named it Satan Ward.
Another carer added her diabetic friend was not given insulin for 24 hours at GWH. Personal care is so vital – but she felt high-tech training was given precedence over mastering the basics of personal care.

One carer questioned if there was still a scheme to provide liaison with carers?
Donna: The Carer Liaison Officer’s services were secured through a pilot project but funding came to an end. Kathryn Cook who was the Liaison Officer wrote the Carers Policy / Pathway etc and laid foundations down in terms of policy and procedure (Carers’ Lead on each Adult Ward / Carers
Strategy. Donna wasn’t sure what liaison the Paediatric team have but she will discuss with the
Paediatric Lead.
At this point Diana introduced Michelle Masterman from the Carers Liaison Team. She explained how they are working with GP practices, Ward Staff and the wider community in the hospital setting to raise awareness of the Carers Notice Boards and information packs etc – they are also particularly working on discharge processes.
Michelle Howard: In GP practices, the Carer Lead will gain accreditation through the work the Carer
Liaison Team is doing.
Lu Duhlig: The AWP ward is part of that process – Carer Leads have been working there for the past
5/6 years.
One carer said if carers aren’t listened to or aided, professionals need to understand their roles will become even more difficult – because without the input of carers, they would be stuck! She had to ask for her son not to be discharged as she was worried about taking him home, but the bed was stripped from underneath him and they were made to take him home.
My husband, who has MS, had been admitted to hospital with a chest complaint which turned out to be pneumonia. He was still having a bad experience when he went to Jupiter Ward. As it was an unplanned stay they didn’t have a suitable mattress for him – he needed an overlay – he was on a trolley bed for 12 hours (and in 4 days still didn’t get the correct mattress). I did complain to
PALS but nurses still didn’t recognise me as a carer and there was no liaison with me. He was left wet in the bed and told to wait for 3 hours. I feel the personal care at the hospital is being carried
out by me.
Donna Bosson: There is a Carers Notice Board on Jupiter Ward as on all Adult Wards. There is a carers information area at the Betjemen Centre. The hospital has won awards for Carers Support – however it is clear there is still a long way to go. Please liaise with the ward Sister. There is also a
Sister’s clinic where you can book 15 minute slots with the Sister. Consultants also have bookable slots for carers too.
One carer commented he was appalled by these stories and someone at the hospital should “ kick some butt.”
Donna Bosson: Malcolm Stewart was a military nurse and “regularly kicks ass.” She understands the hospital doesn’t always get it right, but would also like to point out that they have won several awards for the treatment of and liaison with carers.

One carer commented that the Cancer Unit and Endoscopy Unit were both very good.
Tracey Compson: 2 years ago the Dementia Strategy was launched – they are now putting into place clear standards for an improvement plan. She added they want everyone to be dementia aware and there will be an update on the NHS Swindon website on this strategy soon. Signage is important and she understands this needs to be improved. Be reassured there is work going on.
My children don’t live with me. But I see them every weekend and school holidays. They are both disabled. But they have stopped the disabled money so I can’t spoil my children. Plus I’ve got the worry of paying the council debt. I’m scared they might come and get my stuff. Wish they would wipe it.
David Renard: There are benefits issues here that need to be explored – I’m happy to take it up with our benefits service. The Citizens Advice is always a good source of information.
Tim Saint (Benefits Advisor at Swindon Carers Centre): Consultation around changing the Disability
Living Allowance has just finished. However it doesn’t include children under 16 so not sure if there will be other funding streams. Tim has made an appointment with Vivian to investigate further.
Can the panel answer reference the concerns I have over the standard of care that is received by the people of Swindon (is it a training issue or is care now just a job?). There are good carers and care companies but it is inconsistent. Caring should be a vocation. Swindon Carers Centre from office staff to frontline carers who daily work with clients and their loved ones give service to be proud of. I’m sure others could sing the praises of their individual carers, but alas not all. The buzz word not so long ago was person centred care plans – this is not always placed where is should be on the person who receives the care. Now with carers jobs being lost I fear finances come first and the standard of care, carers training, and the inconsistency is not of concern unless it directly affects you. For some, care seems to be a name of a piece of paper, it isn’t it’s lives. Caring impacts on the loved one’s health and wellbeing and worrying outside care and standards or inconsistencies adds to their worries. Can you assure that the standard of care is truly given consideration and monitored?
Peter Mallinson: The question revolves around Domiciliary Care. In the care service, 94% is given by private providers and 6% in the home. It’s the 6% that is being looked at and could go out to private tender. The media is being wound up over this issue – standards are monitored by the Care Quality
Commission (CQC) which is the Government body monitoring standards of care. During the last round of monitoring every care provider here got an excellent rating. The care staff are trained, qualified and monitored. All complaints are investigated. People are worrying external providers are 2 nd class but they are not. Standards are just as high.

We do have an issue with how we provide the in-house service – there is a lot of detail which I won’t go into but sufficient to say it’s caused us great concern as we’re not getting the hours we need. It’s a performance problem not a finance one. That is why we are going through this process. Rest assured external providers are just as good.
Carer talked about care standards vary tremendously – for example one person who suffers
Alzheimer’s has their walking aids put in cupboards with pads piled on top. Not given drinks, telephones disconnected. No personal care. Do you think we are all idiots?
Diana : Swindon Carers Centre feeling is we are not prepared to only offer 15 minute care slots so we didn’t bid for the service. However the Victoria Centre can refer to SCC for the Alzheimer’s
Sitting Service, but not all the hours are being utilised. We have a contract to provide 500 hours a month but are only utilising 200 hours. The Council has already spent this money with us so it’s in everyone’s interest to ensure they are being used to capacity.
Lu Duhlig: We will go back to the Victoria Centre to ensure funding/referrals are used.
Peter Mallinson: I apologise if there is anything happening that shouldn’t happen or anything not happening that should happen. There is assistance available for anyone who wants to complain. I can’t deal with individual complaints this morning but I will take the details away and promise something will be done about it.
The carer then said she didn’t want the cared for person treated more harshly because of this complaint.
Peter Mallinson: We do not tolerate victimisation.
Why is there a kneejerk reaction to handcuff someone having a psychotic episode? My son was threatened with a taser gun.
Lu Duhlig: Very unhappy to hear of this incident. We have done a lot of work with police around
Section 136 where someone with mental health issues is taken away by Police. I will investigate.
Carer question: Why is there no ECT (Electroconvulsive Therapy) suite in Swindon so people have to go to Salisbury?
Lu Duhlig: There is one in Devizes, so shouldn’t have to go to Devizes. My remit is to flag up carers issues. I can take these issues back to professionals with influence. We have been working with local constabularies to ensure proper care.
Carer responded: Why don’t they go to Lyneham or Brize Norton?

Lu Duhlig: Please come and do some joint working with us on this issue.
Carer commented: We clearly need to educate police more.
Lu Duhlig: We need to re-engage and do more work.
Tracey Compson: We do have a police representative on our steering group. We have asked for training too around dementia – for custody suites. It’s in our action plan for next year.
Mental Health carers are often not seen as carers, they are seen just as husband /wife /brother
/sister etc. and not taken seriously.
Lu Duhlig: We have worked with staff to identify the use of the term carer with our staff. Staff need to be aware of this when they are making an assessment of the service user, so any support people are truly recognised. We need to identify people in a caring role in a much more systematic way.
Carer comment: Suggestion for Donna. I would love to have appointments allocated around the most efficient time so I don’t have to wait for multiple appointments.
Donna Bosson: We can do this, so I need to look at how it’s advertised. I will examine to ensure a much more structured approach. Going back to the previous point, we are doing a lot of work with police in A&E and Crisis Support – joined up work – to ensure the wellbeing of those having psychotic episodes. There are designated places of safety at Sandelwood Court or the Police Station
– not at the hospital.
Michelle Masterman from the Carer Liaison Team: I would just add that joint appointments are working with selected GP practices – we are looking to roll out to all GPs in Swindon.
When my husband had his stroke, I felt as a carer I was left on my own. Why are social services so bad at supporting carers?
Peter Mallinson: I can’t comment on individual cases but generally the carer is assessed for the levels of care they provide. Please give me your details and I will chase up.
As a parent I was involved in the consultation over the design of children’s services. I have had a lot of support from Young Carers and I’m worried that this service could be cut as part of the savings that have to be made. What reassurances can you give me that Young Carers are seen as important to continue to fund?

David Renard: The council is facing financial challenges. We have to find ways of doing things differently. This is why we are carrying out consultation. I cannot announce the final shape of services but all on this panel recognise the value of the role of carers – especially Young Carers who have to balance this caring role with their education and I would like to see this funding sustained at as high a level as possible.
Diana then responded to a query about what Young Carers really are and how they are assessed as one parent of Young Carers felt they didn’t get the treats other Young Carers often do. Susanna
Jones (SCC Communications Officer explained that all invitations to Young Carers events and their responses are logged and if there are any queries the Young Carers team would be happy to look into it.
There are rumours circulating that the new Social Enterprise is not going to fund One Step Ahead and it will then be amalgamated with Upham Road. Is this true?
Peter Mallinson: The Social Enterprise is starting to take shape from the 1 st April and will be phased in until October. As far as amalgamation is concerned, the review is still underway. We are still asking people what they want – for example provision of day centres. There is no plan in the pipeline to amalgamate any of these centres and no plan to close day centres.
Carer replied: Staff at One Step think it may close. You have told me personally staff would move sideways into the Social Enterprise and service users will see no difference.
Peter Mallinson: I reiterate there are no plans – I will listen to what people want and then review.
Michelle Howard: As the newly appointed Chair of the Social Enterprise I can confirm at that at the present time there are no plans to close or amalgamate centres.
Carer asked: Will there be change if the political make up of the council changes?
David Renard: No current council can predict the decisions of future councils.
Peter Mallinson: We don’t want to bring politics in. We will look at what services are achievable with the money available.
Why has there been no update on Tantivy (an overnight respite care centre for children with severe disabilities)?
David Renard: Have had private confidential meeting with Doug Morris. Recently inspected by CQC and the findings will be made public soon. There are other options – I think there should be a fixed residential centre for children. I can’t say much more in public but Doug is pleased. The PCT have agreed to hand asset over to the Council. The legal documents are with the lawyers. There are

issues around the quality of the site but the value of the asset is protected. I will speak with parents when I am able to.
Michelle Howard: It will be fairly imminent but I don’t have a date to announce. We have to work with the CQC.
Carer comment: Little Sparrows provides useful respite and its funding is now in question. It’s held at Saltway once a month on a Saturday for 8 children aged between 6 and 9.
David Renard: I will look into this for you.
How do the services, ie mental and physical health, in hospital & in the community, in Swindon & the AWP area, at GWH & John Radcliffe, work together in the best interests of patients with multiple health problems - with particular reference to how recent proposed or actual changes in methods of working can improve the situation.
Currently, this puts carers under considerable stress in providing the (often important) liaison between health professionals to ensure the best and most effective overall treatment for those they care for.
Even when the patient is lucky enough to have a care coordinator the turnover is so high as to render their ability to build up an effective rapport with and knowledge of the patient and their carer extremely difficult (NB my husband's care-coordinator has changed 4 times in the last year and is due to change again in a few months!!!).
Michelle Howard: Here in Swindon we have pioneered joined up thinking – joint community teams with social care and health so you only have to tell your story once. I accept it does not always work but we are trying!
Lu Duhlig: AWP are in the process of redesigning community teams and how they work with patients. Care Co-ordinators are allocated so the person who co-ordinates their care need to ensure physical and mental needs are understood. We will be working more closely with primary care services (GPs) so secondary care is joined up with primary providers. We are working considerably with our 6 primary care trust partners.
Tracey Compson: We did a pilot where we put a mental health worker in for older people so that mental health liaison worked more efficiently. It could help keep patients in their own homes and treatment more effective. We are working with AWP to roll this out in Swindon. Also, as commissioners we work with partners to ensure pathways across the South West. If someone comes in on a 999 call with no-one with them then we may find it very difficult to flag up their needs, although we do have an electronic flagging system with patients with learning disabilities.
Susan Grant: We need assurances from GWH that when people with severe disabilities are admitted to hospital, either for planned or unplanned admissions, that all professionals normally

involved in that person’s care are informed of this (i.e. SALT, Specialist Nurses etc) AND what is done by ward staff to ensure carers are appropriately identified and supported?
Donna Bosson: We have so many agencies where we have joined up thinking. We are working in an integrated way at the front of the hospital and also in our discharge procedure. We are also working very closely with surrounding areas (Wilts/Berks/Oxon etc)
The Clover Unit.
1.
Has the Triage System been introduced recently?
2.
Was full training given to frontline staff before implementing? (One member of staff did not know how the appointment system worked.)
3.
Can you confirm the staff in the booking-in section are trained to listen and help carers and client’s loved ones when their attention had been brought to possible difficulties in waiting
(the residential home also made staff aware)
4.
After triage appointment , times are given when needed to see the doctor. These things need to mean something rather than appear meaningless (wait up to two more hours after the time given). Office staff failed to book in second phase appointment to see doctor
when slips handed in and even lost slip.
Michelle Howard: What we are trying to bring into practice in Emergency Care at the hospital is a single point of access. Now you don’t have to worry about having to make that decision, you will be triaged appropriately to be assessed in a timely fashion. There is some good learning going on.
Carer comment: What’s wrong with necklace or bracelet systems so everyone’s aware of a patient’s details?
Donna Bosson: There are different ways patients alert us to those needs – including Emergency
Card Scheme which works brilliantly.
Carer: Regarding the triage system – I spent 10 hours at the Clover Centre with two different patients. Am concerned that staff are aware but not always listening.
Michelle Howard: I’m happy to take more details and talk with you afterwards.
Diana: Reiterated that Swindon Carers Centre needs funding for the Emergency Card to continue – certainly administrative support and the roll out to parent carers, so hopefully our professional partners will have heard how important this work is and the funding needs to be secured for it to continue.

As we were approaching the end of the session, Diana drew out some of the main themes in her closing remarks:
Many people are still experiencing poor levels of personal care throughout the health and social services
Recognition of carers is still poor in many service areas. Carers often have valuable information and support to offer which would help the professionals delivering services for their loved ones, but this is still not being respected or valued by many professionals
Service providers, of course, have many success stories and even awards to celebrate, but none can afford to rest on their laurels. The experience of each interaction with each service is only as good as the member of staff you happen to see, so training on best practice must be ongoing.
Diana thanked the carers who had attended for being brave enough to share their personal and painful issues with everybody. She also thanked the panel not only for listening and responding at the event, but also in advance for the work they would do to follow up on the stories they had heard, and to improve services for the future. Finally she thanked the staff of Swindon Carers
Centre, most notably Susanna and Ewa, for their help in making the event possible.
The next Swindon Carers Centre event would be taking place during Carers Week in June.