This experience relates to a real couple, although false names have been used. It describes events prior to hospital admission, three months in hospital followed by transfer to Residential Nursing Care and the struggles associated with funding for that care. Tom has recorded the experience in the hope that some of the procedural information might help anyone facing a similar situation or even some of the individual stages.

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Background    

Tom and Jean came together in 2005 and were married in 2006. After ten great years together, Jean’s health declined associated with alcohol misuse and with the benefit of hindsight, she was already on a long downward spiral due to her addiction.

Tom became her carer and was at the hub of all medical issues, joining her in appointments and clinics. He would answer the arising questions about symptoms and developments while carrying the medical history in his head to connect relevant issues. Jean was an unwilling patient and tried to avoid the hospital at all costs. On at least two occasions when she had been admitted to hospital, she then self-discharged against medical advice and before investigations or treatment could be completed.

Jean’s condition varied over an extended period but generally declined, and Tom became increasingly fatigued. From 2017 he had support from Gateshead Carers Association, which helped him enormously to take care of himself while caring for Jean. GCA also provided valuable guidance on alternative support and systems associated with care relating to NHS and Social Services.

Hospital Admission    

In Autumn 2021, Jean was declining quickly and Tom was struggling with the care demands while Jean resisted support at home or hospital treatment. After a three-way discussion between Hospital, GP and Tom, the GP took control and despatched an ambulance. Experience indicated that the paramedics often have unwilling patients who resist a trip to the hospital, and they are skilled at dealing with this. They found Jean to be more serious than expected and quickly persuaded her to go with them early in November 2021.

In hospital, Jean was critical for the initial days and needed acute care, including stabilisation, surgery and a period in Critical Care. When she became conscious, she demanded to self-discharge even though she was struggling to survive. The doctors anticipated this based on her previous record and prompting from Tom, and a DOLS restraint order had been put in place to prevent this.

DOLS is a Deprivation of Liberty Standard to protect an individual’s rights while providing for their restraint when it is considered to be in their own best interests. It can be raised by a ward doctor who should consult interested parties, including the next of kin, before making a final decision. Once in place, the procedure has to be monitored by a supervising authority, in this case, Gateshead Council, who ensures personal rights are not abused. Tom was able to accept the position of Representative in this process so that he could defend Jean’s rights if required.

Care Needs 

Tom was concerned about the next phase following hospital based on the difficulties faced prior to admission and Jean’s further reduced capabilities. He requested a Care Needs Assessment prior to discharge.

GCA Tip – Tom had been advised that he was entitled to request a Care Needs Assessment to identify an appropriate level of support for Jean after discharge. This can avoid being confronted with an unexpected and unprepared discharge leaving the carer to muddle through. Tom asked the hospital ward and Social Services.

Despite his request and Jean’s generally poor progress after three weeks, the hospital suggested that she could go home if he would take responsibility for her care. Tom repeated his request for a Care Needs Assessment, which was reluctantly accepted.

Social Services became active on the case and proposed that Jean could be sent home with a Full Support Package of visiting carers. This would mean four visits each day to help with personal care. Tom was apprehensive as this would still leave him in sole charge for 22 hours/day, and historically Jean did not cooperate with visiting carers.

Tom need not have worried about the teams of visiting carers as they were now unavailable and Jean had joined an endless queue. Social services suggested that an alternative would be a bed in a residential facility for assessment, interim cover or ongoing care. Jean also joined this queue.

Meanwhile, the Assessment could not be started due to Covid restrictions and the policy was “Discharge to Assess” via an alternative bed or home support. There is a free post-hospital discharge allowance of 4 weeks of support from Social Services. This used to be six weeks but it was reduced in 2021.

Nursing Home 

After several false alarms, Jean was eventually transferred to a residential facility in a Nursing Home in February 2022. 

The original DOLS restraint order in hospital was valid for a few weeks at a time and needed ongoing renewal. A current order is specific to a particular location and ends if the patient is relocated. On transfer to a Nursing Home, the Home Manager immediately raised a new DOLS order.

The initial four weeks were to be funded by Social Services and included the Care Needs Assessment. Social Services appointed an Allocated Worker as primary contact for this period and she would be responsible for conducting the Assessment. The Assessment took longer due to the restricted availability of the Social Worker, and Tom was advised that Jean would be charged at the Respite Rate of £122.60/week for the additional time.

The Assessment was completed nine days after the four week period ended and indicated that Jean needed residential care. She was established into permanent care the same day.

Finance 

Gateshead Council had requested a Financial Assessment for Jean in preparation for arising care costs. She was judged to have assets beyond the minimum level and expected to fund her own care beyond the initial Assessment Period.

Tom accepted that Jean had savings and might have to fund her own care but was also concerned about their home. They jointly own the mortgage-free property, but he found that while he is living there, the Council would not claim any value from the house.

Tom requested that an application should be started for Continuing Healthcare (CHC) Funding. He was not allowed to do this himself but needed the cooperation of healthcare professionals who are qualified for it. The first stage is to complete a CHC Checklist which was done by the Allocated Social Worker and District Nurse who visits Jean in the Respite Home. If this is passed, the case progresses to a full assessment. If not, it is declined at that point. Jean passed the Checklist and the application proceeded.

Tom Tip: It feels like the system is stacked against the applicant at all stages. He suspected that the lack of adequate funding creates this atmosphere. The system is complex and unwelcoming, while various comments were made about the low likelihood of success. The easy option would have been to walk away, but in the longer term, it would be the expensive option with Jean paying for her own care. Be prepared to work at it despite the negative atmosphere.

Initially, the nursing home pressed Tom to sign a contract with them undertaking to pay all Jean’s care costs, which he declined as Social Services were paying at this point. Social Services promised to deal with this but the Home kept requesting a contract and Social Services soon dropped out.

After some discussion, the Nursing Home invited Tom to propose his own modifications to make their contract acceptable. In August 2022, negotiations were still continuing.

Multi-Discipline Team Assessment 

The next stage is the MDT, Multi-Discipline Team Assessment. The regional CCG (Clinical Commissioning Group) appoint a Nurse Assessor who organises a meeting between interested parties. In Jean’s case, this included staff from the nursing home, the visiting District Nurse, the Allocated Social Worker and Tom. There was a discussion relating to Tom’s involvement because regulations require a personal representative to hold Power of Attorney to join an MDT and Tom did not have this. Jean was not competent to represent herself which would be an option for some applicants. The Assessor accepted Tom into the Team.

We should all consider organising Power of Attorney while we are stable because if we wait until problems arise it is already too late to set it up. Tom regretted not arranging this facility while he and Jean were both competent.

Tom Tip - Many people arrange POA using their life partner as the Attorney as they would know the most about personal affairs. However, as we age together, both parties might be vulnerable in later life. Multiple attorneys can be included in the same arrangement, so include someone from a younger generation. Read more about POA on Carers UK's website >>

Tom found the preparation for the MDT difficult and stressful. Guidance notes and regulations are available, but the small print is very extensive and not easy reading. Publications were noted from NHS, CHC National Framework, Beacon, Age UK and there may be more. NHS recommends reference to Beacon, who provides free guidance notes that include the regulations, explanatory comments, and useful tips. Tom worked steadily at it like a period of study in order to obtain the best support for Jean while protecting their assets. 

Like many older people, Tom found it difficult to absorb all this from a screen without a hard copy. Beacon provided the option of a hard copy, so Tom requested one while continuing to study it from his screen. Fortunately, he did not wait because the Assessment was completed before the hard copy was delivered.

Tom Tip - The Beacon guide contains a lot of helpful advice, but at first, it is a huge, overwhelming document. Read the short NHS guide to CHC Funding first to get an overview of the process. Then move to the National Framework with full details and eventually to Beacon with the extra explanations and tips.

Tom Tip - While preparing for the MDT, keep in close contact with the other members of the Team and ensure that they are recognising the important features/symptoms of the subject so that they are sympathetic in the MDT Meeting.

The MDT meeting was held three weeks after the Checklist and recommended CHC funding which was quickly approved by the supervisory panel at CHC. It was claimed that the panel rarely rejects the MDT recommendation. Tom was not advised of the outcome initially because CHC would not write to him directly without POA. When he enquired, he was told by the Allocated Social Worker that the Funding was approved, but by then she had been re-allocated and was no longer supervising the case. There was no replacement.

Eventually, Tom contacted the CHC offices and was advised that funding was approved and written confirmation had been sent to the Nursing Home, but they did not receive it. After further delay, he wrote again to CHC requesting clarification and two months after the MDT meeting, he received written confirmation. 

Invoices 

Meanwhile, Gateshead Council had started raising invoices. The first was for the period from four weeks after hospital discharge until the Care Needs Assessment was completed at the respite rate of £122.60 per week. Strangely this invoice was sent to Jean in her Nursing Home. The home forwarded it to Tom.

Gateshead Council Financial Assessment advised Tom that the cost of care for Jean would be £682.50 per week, and they counted the period from completion of Care Needs Assessment to final approval of the CHC Funding, a period of 29 nights. Once Tom had the written confirmation of CHC Funding he immediately appealed that the funding should have been paid from the date the Checklist was submitted, which would then eliminate the second invoice. His appeal was successful. This was possible from careful study of the regulations which are self-contradictory in parts in defining implementation dates under varying circumstances.

Tom then contacted Gateshead Council about cancelling the second invoice as they did not seem to be aware of funding from CHC. Tom feared pressure from the Council for payment of the outstanding invoice and repeatedly asked for clarification. In September 2022 he eventually received written confirmation that the CCG had notified Gateshead Council in June 2022 about extending their payment to the beginning of Jean’s care and the Council invoice had been cancelled internally in July 2022. This was belated but a great relief to Tom.

Ongoing Reviews 

Tom had been told that when the Allocated Social Worker was withdrawn and CHC Funding was in place, a new adviser would be appointed. There was no contact from CHC so he enquired about their procedure to find that they do not appoint a person to each case. They operate with a small team that deals with arising queries. 

The CHC decision should be reviewed after 12 weeks and then every 12 months ongoing. The funding could be withdrawn if a review found a change in Jean’s Care Needs. In August 2022, Tom had no news of a review but was advised by CHC that they were running late.

Jean’s ongoing three-month DOLS restraint was due for review on 17 June 2022, and Gateshead Council DOLS agent visited her on 5 July 2022. They requested a second opinion which led to a visit from a psychiatrist on 6 July, and the ongoing DOLS due to lack of capacity was authorised. Jean protested against this which led to a referral to the Court of Protection for appeal. This is expected to take several months.

Tom had been acting as Jean’s DOLS representative but was now offered an independent advocate to represent her in the Court. In August 2022 he established contact with the Advocate who explained that the appeal to the Court of Protection had not yet been started. The first step would be the Advocate making visits to Jean in order to become familiarised with the case. Then a decision would be made about whether an appeal is appropriate. 

At that point, he felt that this work might be published even though some of the issues had not reached a conclusion.

Tom; 14.09.22

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